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

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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 sub-stack, 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 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 "Perfound

Autism is Difficult Enough Without The Stebunked Method." It was written by the mother

of an autistic non-speaking son and she argued that facilitated communication or rapid preempting method or spying to communicate or anything like that does not produce autonomous communication. The peace claimed that the messages are consciously or unconsciously influenced by facilitators. She pointed to the historical message passing studies in which a non-speakers 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-speakers 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 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 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 peace. 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 Cofer, 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 is wrapping up his sophomore year at 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 pre-school, started with speech therapy, eventually did ABA therapy. He was in public school,

the special ed program, which is a whole another 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. 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 couldn't be more polar opposite.

“Yeah, which, you know, is what we hear so often, and how did that unlock first occur?”

That happened in September, 2022. I was introduced to the book underestimated, you know, J.B. Handleys, great book. I introduced some anage to spelling to communicate in the world of spelling, and I happen 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 you're 16 on 17, we had tried so many things,

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, 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,

“you know, believe me, and it's like, here's what you need to do, go down there, do this image,”

and 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 I said, became an open spell, or very quickly. It created, like I said, life after

spelling, which was amazing. I liken it to falling in love in a honeymoon. It was just so beautiful to finally be able to communicate than J.B. was right. Wasn't quite six months, but it wasn't long, you know, until we actually had those dreams, as 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 sitting 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. 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 school thought, you know, I'd visit it as 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 an elementary school,”

and I couldn't believe it. So, my wife and I requested letterboards 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 it. They specifically cited Asha as the reason they were denying Asha's, you know, 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-spelning 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 F.C. 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 to 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 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 letterboards. He met with Stone individually. And he was blown away by his capabilities. And we were often 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 we realized 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. And there's so many that are being denied this human right. That's just a figure that I had to do something. And so I wanted to utilize

“my communication, my PR, my writing background. And that's what kind of started the sub-stack and”

publishing articles there and Facebook and all that. Yeah, you know, and 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,

Like, because you hear stories throughout the years of, oh, try this biomed or try this, whatever, right? And this is work 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, 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 a 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. But that's the case. You know, we'll see where this goes. And it blew me away beyond expectations. So once, I mean, literally the first session I was on board. Like, there 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 this led 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. And I'm just curious, like, what your experience was reading that piece.

Well, I, 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 a room 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 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 and now families of, you know, spellers, diapers, 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, it's can't be happening. And essentially, you just have a group of parents, like me, that we're too naive to understand that we're just being kind 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. Well, they always like to point to you. 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, yeah, 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,

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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? And they'll say, well, we know that there were these cases back in the 1990s where 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 light 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 times 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 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 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 principles 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 whenever 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,

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-spelant 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 working done today, on spelling 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, seeing I'm the Gen X, I'm I'm 60,

“I remember when Rayman 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 view to your autism, people would think of Rayman. And that was 30, 40 years ago, 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 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, and tell there was this pushback, and tell 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 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 as 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 have 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 could, 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 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. 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 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 the therapy. 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 a New York

Times article on 1995, like 30-year-old message-passing study involving seven adults that is still frequently presented as definitive evidence against authorship to 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. And one example, the participant saw a telephone while the facilitator saw hat. And when the participant was asked to identify what they'd seen, the response was hat.

The image shown to the facilitator. And researchers interpret that result as evidence that the facilitator was, you know, directing the 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? There's a lot of reasons why it doesn't happen. Again, the neurology for autistic individuals, 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 a praxia. 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. So, once again, this environment,

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 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 think it went great. As a well, why do you”

think that? He said, why 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 to school there. Like, 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 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, 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, 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 or are they just on the same wavelength? Are they, yeah, 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 stone, where he has shown the ability to work with multiple communication partners and answer questions and not just answer questions, more importantly, compose original works, create a 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 an academic world,”

when they're reading papers, they're like, okay, does it sound like them? Is it sound like, you know, they're 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? Okay, and then another point in the article that I'd love your response to is it attributes facilitator influence to what is known as the idiom motor 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 any one of the praxia, 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 the praxia could be

cute 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 idiom motor effect has actually been shown 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 see it enough times, it doesn't make it true. If you really look at

what the idiom motor 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 idiom motor effect and so like there's one study,

influence, but it's been spoken about so often and 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, it rolls to 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 or author their own thoughts, but somehow there's sophisticated enough to interpret these over 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, like again, it makes, it makes no sense. And so beyond questioning whether the idiom motor 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-dapes film, which will be coming out, you know, in the next six months, we follow people learning to spell it, you actually, like, say the letters are 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. Yeah, and the one point I do also want to make again regarding the message passing test tonight. 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 jazz well 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. Okay, and that's in reference to the 2020 University of Virginia study, which use eye-tracking with nine experienced non-speaking, you know, letterboard users

who pointed independently while an assistant held the board. And participants often look toward the correct letter before pointing to it, and researchers found that the speed, accuracy, timing, and gaze patterns made facilitated or cueing 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. 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 what's 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. 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 putting a 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 in the surface, but you know that probably 9,500 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 and confident,”

enough in it. So it does happen, but like I said, if you want to grate 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 this is the epitome of pseudoscience. Yeah, 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. 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

on disclose 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. And obviously a conflict of interest does not necessarily mean that studies findings are false. But it does show why we need to look beyond the phrase the science is 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 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

“but as far as studies and pointing to these big academic studies, I think people need to realize”

like you said who funds them. And is that to say that they're all bad or they're all necessarily biased?

But when you're looking at, I'm calling it 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 tightens. So they're most spelling to communicate or it's spelling methodology or RPM practitioners. These are individual practitioners. 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 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 the 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 larger tension that we return to often on the show.”

Scientific testing can serve a really important purpose. But in a strictly materials framework, only things that we know how to measure or understand can be looked at is 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

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“cases or individual studies, but the one thing again that's not brought up. And I think about”

this everyday 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 first down. 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. 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 facility 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. I don't know a single parent that would want to be influencing their kids communication. What's the point? You know, I think I calculated. I've spent something like 2,000 hours at least with stones 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, 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. Yeah. So were there any experiences that you maybe had an 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 open and one of the

things I'd always been interested in was, was he passionate about, right? That was a great frustration

as 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 when 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 when 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. But like, we had never talked about Harvard. I'm an organ duck. My wife is a Wisconsin badge. You're like, you know, we're a big sport. That was out of the blue as

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.”

They even I had to surrender grease. So it's part of me. I'm like, wow, I came 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 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. That's a great way to phrase it. I'll answer 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 a 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, you know,

I had no idea that he would have had. The best example for that was early first lesson,

his spelling lesson with Don Maria 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 he discovered electricity. He's bell-type 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're often running. That's, 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 maybe shocked you or surprised you?

Yeah. Right. Before all I knew is that he really loves spending a lot of time on YouTube. Primarily his friends were the little Einstein's. They were Disney Junior characters. But what was cool is so we would notice though, and he subsequently showed 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, you know, sure, 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.

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 stop talking to him. You know, I used to tell him, you know, some day because I did believe that I knew that there were cases, not necessarily was spelling by new other 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.

He 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

“time together, I think helped really 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. 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, 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. There's a lot of

with hundreds of other non-speakers and their families and hearing these similar stories as I'm

sure you have over and over and over and never get told. It's so incredibly special to hear

when the breakthrough happens. And because I go back to again, it's just that's humanity. Like we are meant to connect with each other and to communicate. You know, just keep trying, believe in it. 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, you can 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 have shown that up to 75% of autistic individuals have reported

being abused. And that figure is especially high when you talk about non-speakers. This is the most vulnerable population. Why 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 hyperbole. That's just a proven fact. And so, from a father's standpoint, from a human's 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. 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 unlock that's one more dream that can come true. You can't put a price on that. Yeah, 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, hopefully, 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. 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. A day. Stone is spelling and David will read his response.

The stone said yes. I'm totally excited. Oh, we're so excited.

“Yes. And he's like, I'm thinking this will help people. I think that you're right. I mean, I really hope so.”

That's right. And is there anything that you want to say to the audience? Okay. Yes. I'm more motivated to help non-speakers than ever. 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. I'm also curious. And if you have anything you want to say in response

to the New York Times, peace? Yeah. Two. Yes. I think they needed to do a better job of showing non-speakers totally can communicate. 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. I am honored. Thank you guys. I appreciate the platform. I appreciate the work

that you guys have done to bring visibility into this community as 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... Well, another show. But 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 rights in New York, maybe just as a final note to send off people

on, you know, where those stands and how people can get involved? Yeah. I mean, it's kind of

“influx, 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 letterboards, 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, out there with the state or whatever, right? So I moved to the Senate to vote on it in the Senate for the next session, which is there's still currently in session. It's currently stalled right now because the head of the disability community for

the New York Senate, her name is Senator Fehi, unexpectedly at the last minute while it was still in committee review inserted to 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 with these 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 Fehi, to say, "Look, remove these amendments, bring this to the Senate, and it's original form. The bill, you cannot get stronger consensus than 100%. 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.

For people who want to learn more, you have a sub-stack that is so interesting and I'm always

“amazed at what you're publishing there and how often. So where's your sub-stack?”

Yeah, it's copper insights. And we'll link to that in the show notes. Okay, great. Yeah, and I've been doing my own podcasts, which is the lighter side of the spectrum, because not everyone has the time for patients to read these two thousand word essays. All right, 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. 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 here

and see exclusive content from the telepathy tapes vault. Visit our website at the telepathytapes.com

for more info on how to subscribe to our backstage pass. Thank 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. W. and original logo and cover art by Ben Condor Design. I'm Kai Dickens, your executive producer, writer, and host. And thank you again to the sponsor of this episode, Schedule 35.