S2E44: Is Spelling Really “Debunked”? An Advocate Responds | Talk Tracks

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 to 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 Insights https://substack.com/@kauferinsightsYoutube Channel: Kaufer Insights https://www.youtube.com/channel/UCtFGB0DbfHV-G7SntYzoxvwPodcast: The Lighter Side of the Spectrum https://podcasts.apple.com/nz/podcast/the-david-kaufer-podcast-the-lighter-side-of-the-spectrum/id1779167029_______ 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. https://thetelepathytapes.com/ _______ Thank you to our sponsors! Alloy http://myalloy.com/ - Try the original estrogen-powered M4 skincare from Alloy. Visit myalloy.com http://myalloy.com/ and use code TAPES for $20 off your first order! BiOptimizers https://bioptimizers.com/tapes - Make this the year you finally get your sleep, your energy, and yourself back. Get 15% off at bioptimizers.com/tapes https://bioptimizers.com/tapes when you use my code, TAPES. Ka'Chava https://kachava.com/ - Go to kachava.com https://kachava.com/ and use code TAPES for 15% off your first order. Luminara https://www.luminara.care/ - 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 https://www.luminara.care/ and use code TAPES20. MUD/WTR http://mudwtr.com/TAPES - Ready to make the switch to cleaner energy? Go to mudwtr.com/TAPES http://mudwtr.com/TAPES and grab the starter kit. Use code TAPES for 43% off! Quince https://www.quince.com/tapes - Elevate your summer wardrobe. Go to Quince.com/tapes https://www.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.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:03Ky Dickens?

  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,

• 0:26Ky Dickens?

  we do just that.

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• 0:59Ky Dickens?

  Today, I'm joined by David Kaufer, 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 Kaufer Insights, his Substack, where he brings 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

• 1:41Ky Dickens?

  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, "Profound Autism Is Difficult Enough Without This Debunked 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 in which a non-speaker's response appeared to reflect information seen by the facilitator

• 2:24Ky Dickens?

  instead of themselves, which honestly could be looked at as an astounding telepathy test. She also argued that spelling offers families' false hope, can override a non-speaker's independently expressed preferences, and diverts 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 continue to be repeated as settled science to reinforce a particular conclusion about spelling-based communication. 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

• 3:08Ky Dickens?

  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?

• 3:33Speaker 02

  Yeah, I'm David Kaufer. 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. 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 nother story. And during this time, we knew

• 4:15Speaker 02

  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. 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 it's, couldn't it be more polar opposite?

• 4:50Ky Dickens?

  Yeah, which, you know, is what we hear so often. And how did that unlock first occur?

• 4:55Speaker 02

  That happened in September 2022. I was introduced to the book underestimated, you know, J.B. Hanley's great book. That introduced so many to spelling to communicate and 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. 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

• 5:38Speaker 02

  down and read it and, you know, was blown away by their experience and then was fortunate enough to be able to connect with JB personally. And he was just like, dude, you gotta do it. He's like, you know, believe me. And he was like, here's what you need to do. Go down there, do this immersion. I'm like, okay, okay. And 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,

• 6:18Speaker 02

  became an open speller very quickly. It 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 JB was right. Wasn't quite six months, but it wasn't long, you know, 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 sending out college applications this fall. Never, ever would have dreamt this would happen. Never.

• 6:52Ky Dickens?

  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?

• 7:06Speaker 02

  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. 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

• 7:47Speaker 02

  it. They specifically cited ASHA as the reason they were denying it. ASHA's, you know, very visible statement of opposition that they, that they use.

• 8:00Ky Dickens?

  And for those who don't know, ASHA, A-S-H-A, stands for the American Speech Language Hearing Association, and it's probably one of the most prominent anti-spelling organizations. Its position is that facilitated communication 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.

• 8:25Speaker 02

  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. 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 once it became clear that we weren't going to make any progress in terms of getting

• 9:07Speaker 02

  him age-appropriate curriculum. 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 letter boards. 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, big problem, you know, communication. This is a fundamental human right.

• 9:50Speaker 02

  And there are so many that are being denied this, 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.

• 10:06Ky Dickens?

  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 a time where you yourself had hesitation or doubt, you know, if this was a real communication?

• 10:23Speaker 02

  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 will work with, with our kid, sort of that approach, right? Like, because you hear stories throughout the years of, oh, try this biomed, or try this, whatever, right? And this has worked great for my kid. 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, with Don Marie.

• 10:58Ky Dickens?

  Okay, just to pause for a second. So Don Marie Gavin is amazing, and she's the creator of the Speller's Method and leads workshops to get people spelling. So you go for a course, and what was it like?

• 11:08Speaker 02

  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 where this goes. And it, 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.

• 11:27Ky Dickens?

  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, I'm just curious, like, what your experience was reading that piece?

• 11:59Speaker 02

  Well, I, you know, I had two initial reactions reading that. First was kind of a, a level of sadness, frankly, for her and, 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. But 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

• 12:39Speaker 02

  so much and leaned on these really outdated and not very, like, scientifically proven studies. And that's where I also kind of have said, you know, shame on the New York Times for platforming this, 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 of 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

• 13:24Speaker 02

  any of that, right? It was such a blanket statement, like, this is preposterous, this can't be happening. And essentially, you know, you just have a group of parents like me that were too naive to understand that, like, we're just being conned somehow.

• 13:37Ky Dickens?

  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've actually watched it and watched someone typing without anyone touching them.

• 14:08Speaker 02

  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.

• 14:37Ky Dickens?

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• 16:41Ky Dickens?

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• 16:53Speaker 02

  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? And they'll say, well, we know that there were these cases back in the 1990s where, you know, XYZ 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? You know, we don't put these kinds of barriers. But yet, that's what they are asking to be done for, again, all non-speakers

• 17:38Speaker 02

  who are using this level of communication. So, you know, as far as the, the science, and one of the levels of evidence that's actually used on the Asha website is experience, like, practice experience counts as one of the three levels of evidence that they say should, you know, should be considered. That's always ignored.

• 18:00Ky Dickens?

  What David is pointing to is that Asha's evidence-based practice framework includes three distinct components: 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.

• 18:36Speaker 02

  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 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.

• 19:15Ky Dickens?

  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 methods where people are not touched and where you think the evidence currently stands?

• 19:38Speaker 02

  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 you'd hear 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, you know, non-speaking autism with that. And the work that particularly has been done,

• 20:21Speaker 02

  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 that essentially kind of squashed it and tainted the terminology and the practice, which I know families that they use it because they're, they have non-speakers who, who do require that level of support. And, you know, that, that level of support is what gets attacked, even though, again, with so many other disabilities, support isn't attacked in the same way.

• 21:02Ky Dickens?

  Yeah, it's so true. And in so many other instances, the same standard is not applied, right? So there's countless examples.

• 21:09Speaker 02

  You know, there's so many, but I think the one that, 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 away and said, okay, now walk for me. And, you know, they, 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're, you know, you can't really do that.

• 21:29Ky Dickens?

  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 cast 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.

• 21:46Speaker 02

  Yeah, you don't even think about it. Right. 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, there are times when they actually manipulate the mouth, you know, they have to try and get them to form words. But no one cries out like, oh, they're influencing them, you know, that's part of, you know, that's part of the therapy.

• 22:09Ky Dickens?

  Yeah. I mean, it really does seem like a double standard. 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, their response was hat, the image shown to the facilitator. And researchers interpret that result as evidence that the facilitator was, you know, directing the

• 22:52Ky Dickens?

  communication. But from your perspective, how do you understand the result of those earlier studies? And why might a non-speaking person, you know, not be able to demonstrate authorship under those testing conditions?

• 23:03Speaker 02

  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

• 23:42Speaker 02

  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. 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

• 24:21Speaker 02

  game-winning free throw and they clank it because the pressure is on and they're unable 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, 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, I think it went great. I said, well, why, why do you think that? He said, well, I got them all wrong. I said, so you intentionally got them wrong? I said, why did you do that? And he said, because I don't want to go back

• 25:05Speaker 02

  to school there. Like, I don't, you know, I don't want to be there.

• 25:09Ky Dickens?

  That's so funny.

• 25:10Speaker 02

  Right? Like, that's very strategic. And, and again, he had a very good reason not to want to go back.

• 25:15Ky Dickens?

  Yeah.

• 25:16Speaker 02

  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 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

• 25:57Speaker 02

  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.

• 26:08Ky Dickens?

  And one more interesting thing to note about that 1995 study is that while some interpret the non-speaker spelling what the facilitator saw as evidence of facilitator influence, many others see it as evidence of telepathy. Like, it seemed weird because it was actually showing telepathy. So yeah, do you have any thoughts on that?

• 26:25Speaker 02

  You hear reports of that. Like you said, it kind of opens up conversations about telepathy, whether or not there's some type of, you know, non-local communication that could potentially be happening. Is it, are they just on the same wavelength? Are they, you know, there's like a lot of questions there. I don't think there are necessarily answers. I would turn it around and say, we know that there are multiple situations, again, including Stone, where he has shown the ability to work with multiple communication partners and answer questions and not just answer questions, more importantly, compose

• 27:07Speaker 02

  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, the AI age, particularly, you know, in the academic world is when they're reading papers, they're like, okay, does this 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? Basically, is what I'm saying.

• 27:41Ky Dickens?

  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 idiomotor effect, right? Like this idea that a person can make small unconscious movements that guide and 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, or move forward, you know, gentle, of course, aren't responded to. So I guess the idea that someone with apraxia could be cued 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

• 28:24Ky Dickens?

  whether the idiomotor effect has actually been shown to explain what is happening between a non-speaker and a communication partner?

• 28:31Speaker 02

  I feel like that that's not very strong argument because it's one of those 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. And so like, there's one study, which basically the researcher said,

• 29:08Speaker 02

  There's just not enough there to conclude that there could be influence. But it's been spoken about so often that, 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, roll to the left. I mean, they take it to the level that's just, I think, absurd. Let me back up and put it this way. So you don't think that the non-speaker is competent enough to spell on their own 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.

• 29:51Speaker 02

  Like, they haven't been proven, but yet somehow, like, you have this unspoken language. Like, again, it makes, it makes no sense.

• 29:59Ky Dickens?

  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 Tell of the Dapes 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, they're learning it, and they're pointing. It's pretty hard to hand-wave away someone who's looking at a letter, pointing to it, and saying it out loud.

• 30:25Speaker 02

  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 could 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 the letter boards.

• 30:47Ky Dickens?

  Okay, and that's in reference to the 2020 University of Virginia study, which used eye-tracking with nine experienced, non-speaking, you know, 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.

• 31:15Speaker 02

  There's a lot of different studies out there. 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, it's not, it's not even a validated study. I mean, it's not even included in the mental measurements yearbook and 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. So you can't go online and find, you know, what's the 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.

• 32:00Speaker 02

  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 stressful situations, it's more than likely that this motor control is going to collapse. Well, the message passing test is like the perfect test. Because it looks good on the surface, but you know that probably 95 out of 100 times, they're not going to be able to do it the first go around.

• 32:40Speaker 02

  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 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, huh, 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, this is the epitome of pseudoscience.

• 33:23Ky Dickens?

  Yeah, okay, and then another huge important component to these discussions, when we're told, 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? And it's 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, at keeping spelling down.

• 33:46Speaker 02

  Absolutely.

• 33:46Ky Dickens?

  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 is funding some of the research around autism and spelling.

• 34:27Ky Dickens?

  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?

• 34:55Speaker 02

  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 that people need to realize, like you said, who funds 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 they're, you know, most spelling to communicate, or spelling methodology, or RPM practitioners, these are individual practitioners.

• 35:34Speaker 02

  You know, they're not part of some big VC-backed or corporate-backed conglomerate raking in hours and hours and hours of billable money that's being, you know, funneled through insurance. And like, 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, you know, 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.

• 36:10Ky Dickens?

  Right, and I think this points to a larger tension that we return to often on this 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. 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,

• 36:55Ky Dickens?

  and 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.

• 37:16Speaker 02

  You can look at these arguments, the naysayers, the skeptics. They point to these individual cases or individual studies. But the one thing, again, that's not brought up, 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 access. 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.

• 38:00Speaker 02

  He would sit in the living room by himself with his 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, having strong ethics in place.

• 38:42Speaker 02

  I don't know a single parent that would want to be influencing their kid's communication. What's the point? You know, I, 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, 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, you can't fake that.

• 39:19Ky Dickens?

  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?

• 39:31Speaker 02

  Oh, yeah, when he really became open. And, you know, one of the things I'd always been interested in was, what is he passionate about, right? That was a great frustration, is like I said, he was a kid who basically kind of sat on the couch and had his iPad, and 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, I'll help you with that. What are your goals with education?" And he said, "I want to go to Harvard." And I was like Harvard. I mean, like Harvard's great, you know, great.

• 40:14Speaker 02

  But like, we had never talked about Harvard. I'm an Oregon duck. My wife is a Wisconsin Badger. Like, you know, we're a big sport. That was out of the blue as far as I was concerned. And again, it was so early in the journey at that time, that even though I 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. They even, I had a certain degree. So it's part of me, I'm like, wow, I can't even 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.

• 40:54Ky Dickens?

  I'm curious if his knowledge is contained to what he's learning in the school system, or if it's ever, you know, kind of surprised you by extending beyond what he's learning.

• 41:03Speaker 02

  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 that's telepathy, whatever you want to say, accessing information somehow. It's, we know that he didn't get it in school. Like I said, he was in this inclusive, you know, quote unquote, intensive 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, you know, I had no idea that he would have had.

• 41:46Speaker 02

  The best example for that was early first lesson, his spelling lesson with Don Marie. It was about Benjamin Franklin. So, you know, he was going through the typical S2C spelling words, answering kind of known, like, what did Benjamin Franklin fly when you discover electricity? He 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 like, my, oh, wow. That was the moment like, this is crazy. He is so smart. Like I said, we were off and running. That's, that was convinced me like how much he's been absorbing, learning somehow, some way that again,

• 42:30Speaker 02

  we had no idea, because we were just oblivious to everything.

• 42:34Ky Dickens?

  So awesome. And then were there any other things that you learned about once he was openly spelling? That maybe shocked you or surprised you?

• 42:41Speaker 02

  Yeah, right before, all I knew is that he really loved spending a lot of time on YouTube. Primarily, his friends were the Little Einsteins. They were Disney junior characters. But what was cool is so we would notice though, and he's, he subsequently shown us this, that he was learning foreign languages while he was watching Little Einsteins. So we would notice Little Einsteins in Russian or Spanish or different languages.

• 43:12Speaker 02

  And I was like, well, I wonder if he's kind of teaching himself, you know, these languages. Cause 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.

• 43:29Ky Dickens?

  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.

• 43:37Speaker 02

  You know, I always felt horrible in terms of not being able to connect from a conversational style. But my wife and I, we'd never stop 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, but I knew there were cases of non-speakers who were able to communicate later. I said, you know, we're going to find a way. 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, it was hard. I won't, 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, that time together, I think helped really

• 44:20Speaker 02

  build that foundational relationship 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.

• 44:35Ky Dickens?

  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.

• 44:50Speaker 02

  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 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 the 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

• 45:33Speaker 02

  connected with hundreds of other non-speakers and their families and hearing these similar stories as I'm sure you have, you know, over and over. It never, it never gets old. It's so incredibly special to hear when the breakthrough happens. And because I go back to like, again, it's just, that's, that's humanity. 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

• 46:16Speaker 02

  to lose? Because on a more serious note, again, you think about, it's not only humanity that 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 that 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

• 46:55Speaker 02

  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 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.

• 47:40Ky Dickens?

  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.

• 47:50Speaker 02

  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, you can't put a price on that.

• 48:02Ky Dickens?

  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.

• 48:08Speaker 02

  Let me ask, let me see. Hey, Stone.

• 48:10Ky Dickens?

  And then Stone was able to interview with our producer. So Selena, go ahead and take it from here.

• 48:14Speaker 03

  Hi, Stone.

• 48:16Speaker 04

  Yeah, Shabby.

• 48:18Speaker 03

  It's so nice to meet you.

• 48:20Speaker 02

  And again, for transparent, here's the keyboard that we use.

• 48:23Ky Dickens?

  Awesome. And for the audience, you're holding up a cordy keyboard.

• 48:26Speaker 04

  Yes.

• 48:27Ky Dickens?

  Well, Stone, is there anything you want to say to start off?

• 48:30Speaker 04

  A day, two, a day.

• 48:35Ky Dickens?

  Stone is spelling and David will read his response.

• 48:39Speaker 02

  So Stone said, yes, I'm totally excited.

• 48:41Ky Dickens?

  Oh, we're so excited.

• 48:43Speaker 04

  Yes.

• 48:45Speaker 02

  And he said, I'm thinking this will help people.

• 48:47Ky Dickens?

  I think that you're right. I mean, I really hope so.

• 48:49Speaker 02

  That's right.

• 48:50Ky Dickens?

  And is there anything that you want to say to the audience?

• 48:52Speaker 04

  Tell you it.

• 48:53Speaker 02

  Stone said, yes, I'm more motivated to help non-speakers than ever.

• 49:00Ky Dickens?

  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?

• 49:11Speaker 02

  Yes, I want to tell them to keep up their hopes to communicate.

• 49:16Ky Dickens?

  Well, thank you, Stone. And I'm also curious, and if you have anything you want to say in response to the New York Times piece.

• 49:23Speaker 02

  To that, too. Yes, I think they need to do a better job of showing non-speakers totally can communicate.

• 49:32Ky Dickens?

  Yeah, absolutely. 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.

• 49:48Speaker 02

  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. It's 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 nother show. But, you know, these things are happening, right? And that's so exciting, and it's so needed.

• 50:23Ky Dickens?

  Yeah. And then, you know, since you mentioned the Communication Bill of Rights in New York, 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 that bill stands and how people can get involved?

• 50:36Speaker 02

  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 what the state or whatever, right? So it moved to the Senate to vote on it in the Senate for the next session, which is, they're still currently

• 51:17Speaker 02

  in session. It's currently stalled right now because the head of the Disability Committee 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 billing, insurance billing code for it, which doesn't exist for spelling to communicate or these

• 51:59Speaker 02

  other methodologies, because it's so new, then, 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 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

• 52:43Speaker 02

  ear at the last minute.

• 52:45Ky Dickens?

  Yeah, that was a perfect summary. Thank you so much.

• 52:47Speaker 02

  Oh, you're welcome.

• 52:48Ky Dickens?

  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. So where's your Substack?

• 52:57Speaker 02

  Yeah, it's Coffer Insights.

• 53:00Ky Dickens?

  And we'll link to that in the show notes.

• 53:01Speaker 02

  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 or patience to read these 2,000-word essays.

• 53:13Ky Dickens?

  All right, awesome. Well, thank you so much.

• 53:16Speaker 02

  It's been such a pleasure.

• 53:17Ky Dickens?

  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 our reality. 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 thetelepathytapes.com for more info on how to subscribe to our Backstage Pass. Thank

• 53:59Ky Dickens?

  you to my amazing collaborators. Producers Katherine Ellis and Selena Kennedy, technical directing, audio mix and finishing by Jeremy Cole, opening and closing music by Elizabeth P. Dovey, and original logo and cover art by Ben Kandora Design. I'm Kai Dickens, your executive producer, writer, and host.

• 54:17Speaker 05

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