Virtual Book Signing With RFK, Jr. and J.B. Handley: ‘Underestimated: An Autism Miracle’
The following is a transcript of this video. Also see related article.
– Like we are live on Facebook.
– [JB] We are live.
– We are live all around, all right. Hi guys.
– Hi Jenny.
– Hi, Jamie, I want tHe camera to see him too, so everyone can see. Can you… there he is, hi Jamie. First of all, congratulations on the success the spar at the JB and this book “Underestimated: An Autism Miracle.” Bobby I’m so glad that you wouldn’t be popped on, you said you just read it and were blown away by it. Why don’t we just dive right into it with your thoughts Bobby.
– You know what? ’cause I knew about it cause I talked to it and JB on and off while it was happening and was listening to this the tremendous excite and a couple of things really struck me about the book.
– [Voice Over] Thank you JB.
– No, JB who had been friends with for many years is a Portland Oregon businessman, very successful. His son Jamie is a non-speaker who has had an autism from when he was very young. JB has also been one of the people who kind of brought me into the movement for a safer vaccines and for medical freedom. And he’s been one of the really most articulate, sensible, common sense voices on this issue for many many years and has mentored many people in the moment just through his own conduct. And I’ve been actually to the victory school which is the school that JB created or helped create, organize the creation and I think probably find that a lot himself, I don’t exactly know what the details are up in Portland and that Jamie has attended all of his life, and it’s a school that’s designed for kids who are non-speakers and kids who have autism. And, Jamie, I hope you will excuse me when I describe what JB is impression of his son was for the first 18 years of his life, he believed his son was mentally retarded and he believed not only was he impaired by autism but he had the intellectual disability, severe debilitating intellectual disability that was stopping him from speaking. And at one point he called me and he explained this new process which had just been created by these incredibly intuitive teachers who developed this, his ability to communicate with people who are non speakers on whiteboard. And what he told me then, which is one of the stories that’s told in the book is that this sexuality discovery that these children absolutely exquisitely functioning minds and that their difficulty is motor coordination particularly in small skills. And so they aren’t able to communicate not because they’re not having very sophisticated and profound thoughts, they don’t because they can’t force their tongue which has all these nerves and muscles to actually articulate that and their bodies are completely out of their control. And essentially the book which is short I read it in a single night, describes this incredible discovery of a loving father, devoted father at the son that he’s known for all these years is actually a complete person. It’s who it was probably smarter than any of us
– He learned to do calculus and essentially a day and his calculus teacher said I can’t teach him anymore. You need a college level teacher because he’s too fast. And then the sensitivity and they’ve kind of a purity and the clarity of his initial communications with his father and she saying to him, freeze, he’s saying I’ve been waiting to say these words to you for so long that I’m grateful for. I know that this illness that I have has been as hard on you as it has been on me. And I wanna thank you for your patience and for your devotion and for the love that you’ve given me for all of these years. And that was just the beginning and then just is flood of extraordinary acute observations about other people, about teachers who were failing him about the cruelty of the system at it is used by many teachers by the traditional format for we’re teaching these children. One of the incredible stories in this book is there’s this system called BCPA which I don’t know much about, but it’s essentially an association of teachers who are certified in a certain way of teaching children with autism and it’s a very kind of authoritarian way of teaching. That is a risk reward you get punished if you do if you don’t make meet certain thresholds and that you would get rewarded for others. And it’s very meticulous and extremely controlled and rigorous method with all kinds of prescriptions that these people take a year two years to learn. And then JB has hired all these people for his school they’re now running it. And when he comes back from the trip with a utterly new enlightenment and Jamie starts talking to his teachers and telling them the way that you’re teaching is not helping us it’s a cruel way of… we all wanna be on these letter boards and they are making up stories and saying this is he’s not really talking, he’s not really communicating. And he’ll tell them things that only they could know and that JB didn’t know. And yet they maintain this sort of delusion it was reminiscent in a lot of ways of these orthodoxies, these mindsets that JB and I have run into and you’ve run into Jenny. Of course in the vaccine space where you run into pediatricians who have been doing these things for many years, that are very damaging to the kids. And the evidence is finally complete that we have this studies here, we have the data that shows you should not be doing this and they cannot come to the terms with the fact at all of the things that they’ve been doing for many many years are damaging and are not helpful and are actually cruel and somewhat I would say barbaric given what we know today.
– Correct, and I just wanna jump in and say it’s shocking when you went back to the school JB and said look at this miraculous method that has worked for Jamie. It wasn’t like the low VOC technique where they were electrocuting these kids. It doesn’t harm them at all, and the–
– It should have been like the 4th of July with everybody celebrating and instead there was this just rustling air of hostility and anger. And it really it was, I know it must’ve been familiar to you, JB, that running up against a wall of bureaucracy and institutional ignorance.
– Yeah, well, first off Bobby and Jenny thank you guys so much for being here to celebrate in the book coming out yesterday. So Bobby, just to build on a few things you said so a BCBA is somebody who is certified in applied behavioral analysis or ABA. So ABA is effectively the autism industrial complex for treating children with autism. And it deserves to be scrutinized a lot more than it has been. Now, I’m not the first parent of a child with autism to come back and say that my child felt that ABA was torturous in terms of how they do it and at times ABA can be analogous to kind of like dog training. Like it’s very behaviorally oriented, it inhibits the children from behaviors that may in fact be helping them stay regulated, et cetera. And so what happened at Jamie’s very well-intended school, the women who run the school are well-intended and they’re not BCBAs and they were celebrating like the 4th of July as all this fluency came back with Jamie. But what was happening within the school was with about two thirds of the teachers. Every time we’d share these amazing stories we’d get nothing back, we’d hear nothing. And we started to put together what was happening and thankfully for Jamie the teacher who runs the high academic class at his school is not a BCBA. She did celebrate, like it was the 4th of July, she embraced everything that Jamie was doing immediately. And she took him under her wing and really protected him from the rest of the school. And it gets even worse Jamie’s school has to have at least two thirds of their teachers with a BCBA next to their name in order for parents to get insurance to pay for the school, right? So it’s wired all the way through the system and they have been indoctrinated and what they believe is that the letter board that Jamie spells on they believe that this is a Ouija board and that the communication partner is the one it’s actually their words coming out of the board, right? And so they actually take it even further, they go, this is cruel, right? Because you’re giving hope to families. And you’re taking advantage of this poor child who’s not capable of doing any of this, right? Like it’s sort of a triple compounding of awful thoughts that they go through. And what’s so maddening about that Bobby and Jenny is how easy it is to disprove that. And I talk about it in my book, I have a whole chapter on this even though I didn’t wanna write about it, honestly because it’s so stupid. But like you said, Bobby, Jamie has shared things with different communication partners that he’s had that they couldn’t have possibly known. He shared things with me about his school day that I couldn’t have possibly known but even more so a number of these kids go from the letter board to a keyboard which is what Jamie’s working on now. And then the keyboard right now is one that I hold and Jamie spells, but then they go to a fixed keyboard which means they’re at that point in independent communicator and those kids already exist. And so my simple comment for any hater out there trying to say, Oh, this isn’t really real, it’s a Ouija board is like, how many of the kids on the fixed boards do you need to tell you that the letter board was the transitional communication device that got them to the finish line? How many do you need? Do you need one? Do you need 10, do you need 11?
– And Jamie, just to preface this JB, Jamie’s not the only one there are thousands that have successfully gone through this program, right? Or this technique?
– Absolutely Elizabeth Vossler who founded spelling to communicate says that there are somewhere between 1,015 hundred fluent spellers in the world, a number of whom have gone through college and in some cases they’ve done so with what we call a communication partner and in other cases they’ve become independent and largely done it themselves. So Jamie’s not a pioneer. I mean, really he’s riding the coattails and of these amazing families that have already done this. And many colleges have been over backwards to accommodate these spellers but what I can tell you is that like in our school which again is a well-intended school Jamie was in a class of non speakers and after we had this amazing miracle with him obviously we wanted every other family to know what had happened. And so we did, we reached out to each family of a non-speaker and then a BCBA teacher went in behind us and talk to each of them out of doing it. And it was pretty amazing and months went by the lockdown happened, and then we realized what had happened. We didn’t know, they just started. We figured, okay, they’re not gonna at some point the parents have to take the initiative and months went by and we realized what had happened. So we started inviting these families over to our house because I just… sometimes people don’t really appreciate what I’m talking about. If you read the book, you will realize the depth of what Jamie is capable of expressing. Some people think, Oh, he’s hitting like images on an iPad or getting his basic needs but I say like, no, no we have full complex communication on any topic. He can write a term paper, right? He can express his deepest emotions, he can analyze a situation and when parents sit in a room with Jamie for the first time and they have a non-speaker and they watch him start spelling, I mean as you can imagine, it is a deeply deeply moving spiritual event. There are tears falling everywhere, we’ve had parents, who’ve just sat on other side of Jamie and just wanted to like soak in every movement of what he’s doing. They immediately engaged directly with him and realized that nobody needs to interpret anything, they can just ask him a question and it comes back out on the board. And it’s not until that moment that they really realize what we’re talking about and we say like we’ve had the miracle of getting our son back. So I just wanna make that point to families who will invariably encounter skepticism. I’ve already heard plenty, somebody posts, oh this is just a Ouija board, this or that. It’s harmful and hurtful and it’s easily disproven for anybody with even a modicum of curiosity. And Bobby, you you mentioned it earlier, this is orthodoxing and when you invest all your time and getting a BCBA and commit yourself to ABA therapy this refutes much of the tenants of ABA. And I wanna talk about something that I think is one of the most important points and I mentioned this in the book, but you know Jamie and I were told about this therapy by a mom named Honey Rinicella outside of Philadelphia. And she was experiencing a miracle with her son Vince and he was spelling all these amazing things. and this was in December of 2019. And so we got on an airplane and flew back to Northern Virginia to growing kids therapy center where Elizabeth Vossler invented spelling to communicate and I’d been told ahead of time, but the core tenant of growing kids is the presumption of competence. And it sounds kind of a wonky what it means is just presume that every kid is brilliant. just think that always. And when you go to growing kids they don’t even address the parent, they walk right up and address the child. They talk to them in as a normal kid they don’t talk to them, slow. All the parents of STC kids, they read their kids age appropriate material and they teach them age appropriate academics and it’s such a beautiful and simple concept and yet it’s missing from 99% of how kids who are non speakers with autism are taught, people look at their mannerisms, they see the lack of eye contact, they see that they’re not speaking and they slow down their speech and they make these presumptions of incompetence. And ABA is founded on a presumption of incompetence in STC is founded on a presumption of competence and this really manifested itself in a simple and beautiful way. So Jamie and I go into this clinic and I have no idea what’s going on, my head is still spinning and I’m fighting between hope and despair and fear and worry and what if it’s not for him and maybe this isn’t real and all these other feelings and Elizabeth Vossler brings Jamie into a room to introduce spelling to communicate to him. And she turns to him and she puts her hand on his shoulder and she says, Jamie, I know how smart you are. And literally no one had ever said that to Jamie would that depths of sincerity and realness before and I’ve asked Jamie about that moment later. And he says some most amazing things the first thing he said was I thought to myself, how does she know that? It’s like he’d been sitting on this secret this whole time kind of watching the world go by, watching people treat him he’s stupid. So he said, I thought to myself how did she know that he said, and then I said or then Jamie said to me, I thought to myself she is the most adorable person in the whole world. Right? And Elizabeth went on, it was such a beautiful thing And the reason I can repeat it so perfectly in the book is ’cause it’s all on videotape is every session Jamie’s ever done was going to communicate. And she basically explained to Jamie, Jamie, I got lucky I was born and I could talk and for whatever reason, that part of your brain and your mouth did not connect and that’s been really frustrating for you. And she went through and explained how, just as Bobby said autism is really a motor disability not a cognitive disability. She knows that speaking and typing and moving his eyes are really hard for Jamie but she’s gonna give them a method to communicate, it doesn’t put as much pressure on those areas that are hard and it’s gonna be a way for you to be able to connect with the world. And I really can’t emphasize that simple concept enough because it’s so important. Just imagine for a moment if what Elizabeth is saying is actually true. Imagine that there are three to 5 million children in the United States alone which is the roughly 40% non speakers within ASD. Imagine for a moment, if they’re all like Jamie imagine if they’re all cognitively brilliant. Imagine if they’re all being underestimated as the book is called and mistreated and imagine if they could all be unlocked with the right amount of patients and therapy and everything else. And on the one hand it is profoundly heartbreaking to imagine that we’ve missed it by that much.
– And the scale of mistreatment alone.
– I mean, I’m just thinking about my own son who was in a school with the best of intentions, who had teachers who loved him, had parents who loved him and yet, as the years were going on, he was becoming more and more and more frustrated. And the number one reason was nobody believed in him in his real intelligence. And I think about that compounded over three to 5 million children and young adults and their families, it’s mystifying that we may have missed things that badly. Jamie is certain that they’re all like him. Jamie is certain that every one of them is just like him. Some may have more complex motor challenges, some may take longer to learn a way to communicate but he is certain that cognitively they’re all like him and I think–
– JB, the center that you went to didn’t they tell you that they haven’t met one child yet?
– So I was excuse me. Yes, exactly so I was still, no, we only went there for two days and I was really struggling with the scale of what I was realizing was plausible and by the way, I’m just going to take a little aside here ’cause so Jamie just said a funny little word to me and I’ve asked him about this ’cause this is kind of a thing that we do where he’ll say a word that’s not really a word and I’ll repeat it back to him. And so like a million other examples I asked Jamie, so why do you do that? Just like that, right? Why do you do that? Or what’s what’s the point? He said, the point is you repeat it and I know you love me
– So you better say it right now Jamie.
– Sorry, I lost my train of thought. Now, so I was really like questioning all this and starting to internalize the potential ramifications of this. And so I asked Elizabeth, I said have you ever had a kid who’s come to growing kids therapy center with the autism label non-speaker and they actually were cognitively disabled, right? You literally low IQ, mind of a three-year-old whatever terrible terms they use to describe our kids. If she said not yet.
– Wow, it’s shocking and…
– So I wanna read on there are some comments coming. I wanna read one because it
– Before you start, maybe will you just explain to the people who are watching exactly. How do you get around the motor skills issue?
– Yeah, yeah, so it’s such an important question. Okay, so what let’s just presume that the shared disability is one of motor planning or motor function or motor cortex whatever term you wanna use. And the kinds of things you’ll hear from the non speakers is they’ll say my body’s not my friends. I can’t get my body to do what I want. I wanna fly to Hawaii but my body goes to Alaska. Like I’ve heard a lot of different ways for kids to describe this. And importantly fine motor seems to be where things are the most challenged and one of the areas that I didn’t appreciate at all that would virtually every kid I’ve seen is true is ocular apaxia being able to move your eyes properly. So imagine trying to get up and down this letter board and point things in various corners when you literally have a hard time getting your eyes to even work, okay? So what spelling to communicate does is they take it out to find motor fingers, mouth and they put it into gross motor you’re moving your shoulder to point at a board and they have a whole brain map and explain this in a much better way than I ever could. But what they basically say is when you do that it’s much easier for a child to get their thoughts out. It’s very hard for a non-speaker to retrieve words and bring them out their mouth even if they can articulate, there’s like a block there and Jamie experiences this and explains it to me. But when they’re not as taxed when they’re just moving that shoulder and really nothing else, it starts to flow and I wanna be really careful to explain this. The best analogy for me is somebody with a stroke and they lose the ability to move a part of their body then they have to go through very rigorous therapy. And what happens is basically a new map builds in the brain ’cause you have neuro-plasticity, so a new movement area myelinates and then they slowly regained that ability to move because of neuroplasticity. That’s exactly what they’re doing here. They’re building neural maps that didn’t previously exist and myelinating them just like you practice a golf swing and one day it becomes like second nature or anything else. And so slowly pushing on gross motor with a ton of repetition and I wanna emphasize that we worked with Jamie every single day on this. He just slowly, slowly slowly got better and better at pointing at letters. And what they do is they take the kids through lessons on different topics and they ask the the child to spell words from those lessons. And then very slowly over time they go from asking them to spell words to asking them to answer questions about the lessons. Then they go from asking them to answer questions about the lesson to the magic threshold which is they ask them to give their opinion about the lessons. And that’s sort of when you hit Nirvana and I’m gonna tell this story really quickly ’cause it is a great story in an illustrative. So Jamie learned how to spell from Elizabeth Vossler, in December, we went away and worked really hard and by late January, we were down in Southern California with a woman named Dawn Marie Gavin who’s another practitioner. And Jamie was doing a lesson on the Boston red Sox when they won the world series back in ’06. And he was spelling Fenway park and all this other stuff in my dad was in the room and we were sitting there and I’m a diehard Yankee fan so I was suffering my way through the lesson. And we got to the end and Don Marie was on a 26 letter board which is needed to be able to spell any independent board and then she said to Jamie, Jamie what did you think of that lesson? And I was like, wait a minute no one’s ever asked Jamie that, that doesn’t have an answer, that’s an opinion.
– You know I look at my dad like, Whoa, what’s going on here and Jamie spells, and I’ll never forget it. The Sox one, but the Yankees are champs in my family. And– I mean, I was dead, my dad was dead. And it was the moment where the last barriers of hope or whatever came cascading down where I was now a full on believer that the world had changed in our family and in Jamie’s life forever and he knew it too.
– I love that story so much. And I just wanna ask you JB just to reiterate that there’s no age limit for this, correct?
– I mean, so I know a story, his name is Danny witty and he’s got videos up now he’s down in San Diego, he’s this beautiful, amazing man. I’ve seen him and I believe he began as to see at 33 or 34.
– [Jenny] Wow!
– Right? And much as a 70 year old stroke victim can regain the ability to do certain things through repetition. There’s no reason to think that a non-speaker of any age wouldn’t be capable of doing this. And if anything, I don’t ever want to dissuade someone from starting early, but it seems like as they hit their teens it becomes easier and easier. Again, I don’t wanna say that it’s easy all right? Because some kids may take a year to get to where Jamie got in three months. And I think the most important reframe that we parents can do for our children and it’s not an easy task is to believe, is to firmly believe. And I was surrounded by some amazing parents who I’ve credited and talked about explicitly in the book who they kind of bridged hope and they bridged belief for me. And even a day after Honey Rinicella called me and I had already talked to another mom who was very schooled in spelling to communicate. And she’d really opened my eyes to this whole idea of treating the children age appropriately and teaching the major appropriately. And I just decided to look at Jamie a little differently and never alter my cadence again. Always presume he understands everything I’m doing. You know they tell you, Jenny you appreciate this a little more ’cause you’re a parent. Bobby they tell you these kids with autism never, ever ever read body language.
– Ha, yeah.
– Never read body language, right? And that’s where I think ABA has great fault, in ABA they want the kids to look and behave like us if you will, normal whatever the hell that means. And you know look into in my eyes, put your hands down.. You know, Jamie tells me when my hands are shaking up in the air, I’m regulating myself, I’m doing that to calm down to make myself feel better enough. So imagine being in the middle of something that allows you to maintain your head space in a room and the teacher’s snapping at you to cut it out and have quiet hands as they might to say. And what I say is when the kid is bouncing the ball off the wall, picking his nose, looking out the window, making funny noises, they’re listening the whole time. These are the best listeners in the whole world, just let them be, let them do their thing learn to teach them within that environment and they’re the keenest observers. I mean, Jamie knows Spanish because his brother and sister took Spanish in school and we would drill them in the family room and he’s just sitting there absorbing everything. Jennifer Larson who’s–
– One of the great stories, I wanna hear the rest of what you’re saying Read the stories in your book is that one of the first questions they asked them is they’re telling him a story about popcorn and then they’re giving them a quiz to understand what his comprehension level was. And he answers everything perfectly. And then they say to him, where do you eat popcorn? He’s says I’m eating there. How did he know that? And he’s looking for it So he doesn’t need an eat popcorn at Cracker Jacks.
– Cracker Jacks, yeah, exactly.
– And he said What do you eat when you go to a baseball game and he made it at least cracker jacks and he’s never had cracker jacks.
– I mean it still amazes me the millions of things. Again, Elizabeth Vossler taught me these are the keenest observers in the world. I think there’s something about the loss of one sense, I don’t wanna speculate why, I just know it’s true in the case of Jamie and certainly other other kids who I’ve met, they don’t miss a thing, they don’t miss a thing. And there’s all these terrible stereotypes about autism, about whack of affection this and that. One of the many amazing things about Jamie is he cares more about his friends and family than anything in the world. If a friend of his is down and out at school that’s all he wants to talk about, right? His sense of priority for what matters in the world, he doesn’t do social media, he’s not on a computer those things are too hard on his eyes, right? ‘Cause he does have ocular challenges like they all do. He’s in nature all the time and he just loves his family, he loves his big brother. When his big brother goes away to college, he’s devastated wants to talk to him, loves his baby sister. He’s got a bunch of cousins and aunts and uncles around here, that’s what matters to Jamie. And he grounds all of us, he grounds all of us with his prioritization of what really matters in life. And he’s got a bunch of buddies on wetter boards and they meet once a week, they’re all like him. They’re also the do browse social clubs and many of them chose to write essays for the book. This was a very exciting time in our weekly zoom calls where we introduced this idea of this book and each boy was given the opportunity if they wanted to share some of their thoughts with the world, and of course we put those into its own chapter. And I mean, some of the remarkable language that you see in terms of how these boys express themselves and I think that’s something else that I wanna touch on that it’s a little bit of a pet peeve of mine and Jamie has affirmed it for me too. Like there’s a remarkable a great book called the reason I jumped in it’s a Japanese boy who were into spelling a letter board, right? The only issue I take with the book is the way it’s positioned. It’s positioned as like they found a martian like inside the mind of a boy with autism like one in a billion that this happened, we somehow got into their brain, right? It kind of discourages other parents from giving it a go, right? It’s like, oh, okay this was like a real normally, Something weird happened, no, it didn’t nothing weird happened. And moreover, it’s not a book about the autistic mind or whatever frames they use, it’s that kid’s mind. Like if I wrote a book about my philosophy on the world it wouldn’t be a human’s view of the world, it would be JB Handley’s view of the world, right? And Jamie takes real exception to that too. Like, first of all, he doesn’t identify as autism. He says, I’m a non-speaker right? I’m a non-speaker and moreover I’m just me and I can tell you, like being on the phone on a weekly basis with six of these boys they have some shared values. They’re all different, they’re all different they’re not all the same. Why have we categorize these kids? Right? Oh, this is how people with autism think, no, it’s not, that’s how that kid thinks. And so it just drives me bananas. I’ve seen what beautiful individuals, they are just like the three of us don’t agree on everything and have different views of the world and everything else. Why do people do that? Why do they have to over categorize our kids? So that’s just a little rant of mine and Jamie’s definitely affirmed it with me that it bothers him as well. Just to be Oh, you have autism therefore you think this way, no, he doesn’t. He’s just Jamie.
– [Jenny] That’s right.
– I don’t want to be a spoiler, one of the most exciting things about the book is that the first half is written by you JB, but the second half that it was written by Jamie and interview the era as him as I never read an interview is that point yet and just the clarity of thought and the purity of his, all this comes through and his humor and his power of observation is constant engagement and the depth and the profundity of his understanding of what’s happening in his environment and in the interactions, social interactions that people are out. One of the things when people describe kids who have autism one of the first things they say is that they have no social cues. I can’t read social cues, and yet his capacity to understand these very complex social interactions that are really high level on the eloquence which here is really beyond comprehension.
– Can we answer… you go ahead.
– They all are extraordinarily sensitive, every kid I’ve met, I should say, I shouldn’t generalize. The kids I’ve met are extraordinary sensitive, Jamie is extraordinary sensitive. Jamie is able to categorize people at his school as believers or non-believers in him, right?
– Yeah of course.
– He picks up on it and he’s declined to going into certain classes because it’s being taught by a non-believer. We share these observations with the school, right? And it’s a process, and so yeah, when they talk about like a whack of picking up on social cues or whatever, I mean, give me a break, give me a break. And again, that’s what I go back to. This was really Jamie’s idea to write the book and Jamie really wanted to write the book just to reach other non speakers, right? He refers to the experience he had for 17 years as being in a prison of silence, right? Which is a really heavy way to think about it. What struck me was just the scale and how we might’ve just gotten the whole thing wrong and I just don’t know if people can really wrap their heads around this, like–
– Millions of non speakers.
– Three to 5 million people.
– [Jenny] Right.
– I mean, it’s unbelievable and like so many things there’s pedigrees and money and brittle ways of thinking and non open-mindedness that are keeping this from happening faster. You have the American speech and hearing association coming out with a repudiation of these methods a couple of years ago which basically rendered all, but the most bold SLPs, SLPs are speech language pathologists who are very very important to these kids. It rendered all but the most bold of them unable to do this method with kids even though I mean, Jamie was on this touch icon device that he was carrying around his school. He had this thing for four years, all right? It got to the point where he could like touch enough pictograms to say a sentence they asked him to say, he never used it spontaneously to get his needs met. In two months or three months, his hyper fluent was going to communicate, right? We spent like eight grand on this device, right? I mean, this thing was… and we asked him do you want to see this thing? You know, no, you wanted to roof test it, like I never want to see this thing again. Right? And like I present this this information to the head speech pathologist at the school who’d introduced all these devices and the poor guy. I mean, he’s got like steam coming out of his head and he just falls back on the ASHA statement that what Jamie’s doing, isn’t real.
– That’s bad. We’ll see how this like circular negative spiral can happen when these idiotic organizations do what they’re doing.
– Its true and you know, one of the things that a collective concern in the autism community with as far as parents is, who’s gonna take care of my child after I die? Who’s gonna be there. This gives them a future, this is a game changer. If we’re talking 3 million non speakers have the same similar cognitive ability as all of us?
– I got to tell a story, I don’t think this one’s in the book, but my wife and I had been organizing a farm-based living environment across from his school where we were imagining kind of handing him off for the adult ears and being a part of that. And because it’s really hard to gauge what Jamie wants to do with his time after school when he can’t tell us. We’re left to sort of divide it from like smiles when he does certain activities, what are we gonna do? So we’re like, well, will create this community of others like him and all the parents will get involved and to the very thing you’re talking about, Jenny that intense fear of what happens when we’re gone. So we’re pretty far along with these plans right? Now Jamie’s observed us doing all this over the years, right? We could never get his feedback, but so finally we’re at a point where we could ask him anything. And so we’re like, Jamie what do you think about the farm? Right, he knows, he’s like, yeah, I don’t wanna do that at all. And I mean all I could do was laugh, joyfully.
– What do we want as parents? We just want our children to be happy doing what they want. And Jamie’s goal 10 years out is to be speaking and married.
– Oh well then.
– I saw the great part is the book is when he’s giving dating advice is
– Yes, yes. You know what they are and it’s, you really see it. I mean, there shouldn’t be any surprise after everything you’ve already heard but they drop into teenager, cadence, right? They drop teen lingo and it’s beautiful, right? And they think about things at alternate ’cause again these are… I hate to use the word normal. These are cognitively fully developed beings with a motor deficit that makes it hard for them to control their bodies. And Bobby, I really think like neurologists need to appreciate this because to me they’re giving a target within the brain for where the problem is, right? I can’t say when or how it develops exactly. I don’t know the answer to that but I know what Jamie tells me about. What’s hard for him to do. I’m gonna tell another quick story, and this is kind of next level and this isn’t in the book but I know there’s a lot of parents who are listening and it’s something that we’re really working on now and I’ve written about this on JB Handleyblog.com but basically Jamie’s now doing therapy on something that they call initiation which is basically this brain body disconnect also inhibits their ability to initiate. Just initiate, just to do things you wanna do for the very reason that… imagine you had all this stuff you wanna do with your day and you couldn’t get out of the chair, right? So Jamie does exercise where we put three objects in front of them on a desk and then he spells on a letter board and the objects can be as simple as like, coffee, cup, iPhone, scotch tape, Jamie spells on waterboard. I will pick up the coffee cup, okay? Then my job is just to sit there and not to say anything. Now, remember he’s only spelled it on the board, right? There’s no verbal command from dad that he’s very used to. And then we’ll ask him how long do you want us to wait? And he’ll say one minute, okay? So we all just sit there and wait and Jamie sits there and he just kinda sits there at first when we first started doing this therapy, after a minute his therapist would say, eyes down Jamie would look down, see the object, then he’d grab it, everybody would celebrate. And what Jamie explained to us is for that entire minute I was trying to pick it up.
– I was trying to pick it up the whole time, okay? If that’s a shared disability by three to 5 million people imagine how many ways that’s misinterpreted.
– That’s right.
– Imagine how many ways they’re trying to… Jen Larson told me a story of being down in San Diego working with her son on waterboarding and she went to put the room service stuff in the hallway and the door closed behind her. And Cade is in the room by himself. She starts banging on the door, right? We can all picture the scene. Well, Cade is already flown on a letter board, okay? Kids wanna Jamie’s best friends, they have zoom calls together. He’s amazing, he knows exactly what’s going on. His mom is banging on the door, his mother that he loves she’s a little panicked. He never comes to the door, okay? So she’s able to get in, calls the general manager or whatever. She sits down with Cade, what was going on? Well, it turns out when there’s a little bit of anxiety in the mix, that initiation thing gets even harder. So imagine a child like Jamie or Cade under duress in a school environment, being asked to choose between Sue simple objects. He can’t even figure out which block is red, right? Like imagine how many ways this initiation disability is being misinterpreted as lack of intelligence by well-intended but misinformed caregivers. And the epilogue for Jamie is that as the months have gone by through initiation therapy he’s now got objects across the room that he says I will pick that up and put it on the desk. And he goes and does it okay? And then what we see is much more frequently, he picks up the waterboard to get needs met from us. And so we’re seeing initiate even initiation therapy can make it better and can help these children. But imagine this insight was so new to me, despite how many years I’ve spent trying to do the right thing by Jamie. Was so new to me and then it was deeply disturbing to imagine all the times that mean he may have wanted to do things and simply could not get his body to do it.
– May I ask you something because I had the tests that you just described seemed to be like absolute indisputable proofs at that doesn’t letter board is real, it’s not a Ouija board ’cause it’s a non-verbal communication. You can write down which one he’s gonna grab. And then he grabs it right one every time. Have you ever shown a demonstration like that to one of the people who are resisting and my real question is, have you ever been able to get through it took you 17 years, 30 or child. Have you ever been able to get through to one of those people who was completely subsumed in that orthodoxy and just resistant because you know or that’s what they were trying to do.
– I wanna try to put this in context, in the last 15 months 99% of our energy has been dedicated to getting Jamie better. And one of the things that we refuse to do is never kind of use Jamie as like the proof monkey, if you will, right? And we have chosen not to engage with the haters. We have chosen to let Jamie be a model and an example at school and his the amazing teacher who brought Jamie in is now training to be an STC practitioner. Every classmate who’s in the high academic class with Jamie and they’re all speakers have embraced him. And they’ve recognized all his intelligence, rather than feel compelled to try to convince an idiot of what’s obviously true. We’re just going to manifest in what Jamie be the best student he can be. And they can get on the train before it leaves the station if they want or they can’t but I will be damned if I will sit in the room and try to talk someone with that skill of idiocy into something that is so patently obvious and it’s beneath Jamie to ever utilize him in that fashion. So the quick answer is no you also got the longer answer and it’s embarrassing. It’s embarrassing. The people who deny this, they’re gonna wake up one day, it’s unbelievable. It was a bit Vossler, she repudiated the statement from ASHA with one of the most beautiful essays I’ve ever read. You can Google ASHA statement by Elizabeth Vossler Rebuttal. And what she basically says is when you sit down and bear witness to one of these children’s spelling you have a choice to make in that moment, you have a choice to make, right? You can either stay on the path of denialism or you can recognize that what you’re seeing is real and all the implications of that, that choice to me made it. And the people who can’t make it they’re the same people who were doing dances and believe that’s why the sun came up in the morning. I just don’t even time for them and some will come around in many wounds but here’s the thing, the energy of a of a parent and a family who has a child come out the other side of this as a speller is so profound. And if we just get a few more of those there is no way all these schools and all these ABA caregivers will be able to survive. And I wanna be really clear about something. ABA is the like autism industrial complex here. Okay, they control the insurance, right? Because they’re the quote unquote proven science and EBA therapists are really into their data, right? They’re really into their data. And when Jamie was having behavioral issues at school they had this f’ed up Rube Goldberg like chart. If he sits for five minutes and he can put one foot outside for 10 but then he has to go back in and then he can do this. Like this was the way to like he was having some outbursts in the outfit. So this was their whole way to do it, right? So we go away and do this spelling to communicate and we come back, all of Jamie’s behavioral issues are gone ’cause guess why they were treating him like an idiot and that’s why he was acting out. So their stupid little decision tree was completely useless. At some point people need to call out like, this is just stupid. Like, what you’re doing is stupid. You misunderstand these children and many of the letter borders and all the way each of them speak for themselves ’cause that’s the beautiful thing about this community. Now, these children are very eloquent and young adults. Most of them say ABA is torture and inhumane, okay? Now that doesn’t mean that there’s not gonna be a family who says, Hey it saved my child when they were two, three and four and I’m not about to say that we should throw Elvis out. What I can tell you is that many of the communicators who were non speakers say it’s inhumane. Jamie says, you have to be, what was the word he used? I don’t want to misquote him, people who do ABA are mean-spirited
– Yes, when I interviewed him, he said, yeah.
– I don’t think that’s true across the board by any stretch. But I will tell you right now, Bobby, someone like you who’s a little bit more objective, I think knowing what you now know about these non speakers if you bore witness to an ABA session it would probably turn your stomach because it’s very it looks like dog training. It’s very, very like admonishing and curbing of behaviors and that’s not normal. And I mean, it’s…
– There’s a lot of pushing their head for eye contact,
– Oh my God.
– And pushing them in the corner. I’ve caught Evan with a therapist, pushed up against a corner with the table against him.
– I mean, that’s the thing and they had some–
– What as your action?
– For my wife they had some aviation therapists show up at our house in California back when Jamie was two or three. And they started doing this really kind of like not corporal punishment but like really like firm and aggressive. And Lisa was like get out of here there’s no f’ing way can be good for a kid. Like she just pardon my language, by the way, everybody she just knew that this couldn’t be right. So I just think that… and the STC people have been shouting this from the rooftops. They just don’t really have a platform but they’ve been shouting this from the rooftops because Elizabeth and there were other spelling methods like RPM that’s also been amazing for many children. They’re hearing from all the non speakers, they’re just taking the data from the children who received the behavior. And when you start to think about it from their perspective, that they’re brilliant you start to realize, Oh my God can you imagine how torturous that really is.
– You know JB–
– Why JBs book ’cause a lot of people are asking right now where to get it. You can buy this book at handleybook.com and I’m very proud that it is a part of CHD books, Children’s health defense. It’s one of our… we have our own publishing company or on imprint. It is many of you read some of our other books but this one is just fantastic. And are they selling it on Amazon or —
– It’s on Amazon, it’s number one in a bunch of categories today. That’s me and Jamie signing one so handleybook.com you can get your own signed copy. You don’t wanna sign a copy and then go to Amazon and get it. Jamie and I we got our stack of books so we’re assigning them today.
– We’re assigning them to and Jamie how did we do in this little interview? Do we bore you or was it good?
– Okay, so I wanna give a little bit of a frame as we wait Jamie he’s been obviously sitting here listening to everything. But I just need to give a little context because the one thing I never wanna do is kind of like do something that might be discouraging for a parent later. So this is like graduate level board, okay? They actually start, I don’t have one with me with like an eight letter stencil board and it’s really big, right? And I mean, like everything it’s like training wheels and then you keep moving up. So this is what we call a laminate in STC land, okay, and Jamie literally just like points and you call out the letters and when he’s done, he gets done, and that’s how, you know what he said. But Jamie was very clear right before the book was launched that he only wanted to work off his keyboard which is his new communication device. And so what we have is a magic keyboard from Apple, got a little ring on the back so that I can hold the keyboard ’cause he still wants to tell it in front of him. I have an iPad right here and there’s an app called Proloquo for text. So it’s P-R-O-L-O-Q-U-O for the number and then text. And Jamie has become a lot more prolific in spelling ever since he’s gotten Proloquo and the reason for that is I think that he gets the immediate feedback mechanism from the iPad and he can really see it. The other thing that’s amazing, and again, I don’t like to, in any way we’re not doing this to prove the doubters wrong. I really refuse to kind of go down that path, but all I can say is like when you watch Jamie spell on the iPad he’s gonna look at the keyboard and look at the iPad because he watches very carefully. What he is spelling? And he uses the delete key and he uses the space bar cause he’s spelling, right? Just like we all do and then he hits return and what’s really cool about it for him is when he hits return, it says what he wrote, so his dad doesn’t have to. And so it’s a little bit more of an intimate interaction with other people because he doesn’t have a human between them, right? It’s all kind of him. And as soon as Jamie started doing this only about a month ago, he realized like, Oh this can get me independent and he’s already said like I don’t think we’re gonna need my communication partner much longer than he’s told me explicitly. I wanna be independent by summer, right? And who’s to doubt him. So Jamie, Jenny’s question was how are they doing so far?
– Go ahead.
– [Voiceover] All guys are awesome.
– He said all guys are awesome.
– What state are you in? Are you in Florida?
– I’m in Hawaii right now.
– Are you in Milwaukee?
– I’m in Hawaii right now.
– [Jenny] Hawaii, Hawaii.
– I’m very far from Hawaii Bobby.
– I’m gonna live in Milwaukee,
– No we are in Maui its 11 in the morning.
– Wow, I’ve been watching some of the questions and there is one that’s kind of reoccurring which is about does this program help a verbal child? That is not a hundred percent conversational.
– Yeah, Yeah, for sure. And it’s such a great question. So what spelling to communicate people will say people will say is that this is really for non speakers and unreliable speakers. And I think what unreliable really means is that you can get into these motor waves, right? And so I, for example if I asked Jamie a question he’ll typically answer yes ’cause it’s just sort of been drilled into him, right? That’s not a reliable answer, he may not wanna do that thing at all, right? And that’s really confusing. It’s a verbal mover motor wave and so the board is reliable, meaning that what comes out of the board is what the child’s actually thinking and so for unreliable speakers, STC can be amazing.
– [Jenny] Right answer to that. Bobby any other questions?
– How do you like Maui Jamie?
– Those are
– [Voiceover] I love it, I want to live here.
– me too.
– So I wanna mention something ’cause this is a source of criticism sometimes and misunderstanding. So I’m literally holding the keyboard right? You can see his eyes going back and forth as he’s spelling. And when kids first begin spelling to communicate the practitioner who you work with is very very likely to prompt much more using verbal prompts and using prompts with their hand. They won’t touch the child, they’ll never go hand over hand which is what’s called facilitated communication. And so people will often mistakenly say this is facilitate the communication and it’s not. But what you can see with me is that my prompts have really really faded and basically down to going, ohm, ohm, ohm I’m just giving him a little support underneath his typing. You know, no different than a coach does with a player because we’re fading towards independence. So if you get in a room for the first time and you see that the practitioner is really, really really prompting your child, it’s because they’re just trying to train their body. This is not about cognition it’s about motor planning and verbal prompts help begin that process. So I just wanna make that clear to people. Somebody asked, so Handleybook.com is where you can get a signed copy. Amazon, Barnes and Noble most other booksellers are also selling the book right now as STC is not the same as Proloquo, no it’s its own different thing. There’s an app called Proloquo for texts but I wanna be really, really clear about this. We’re like at PhD level with Jamie now, okay? So if you begin as 2C you’re gonna begin on a letter board. You’re not gonna have an iPad because fine motor is the thing that’s really taxed. And so it takes a lot of time to get to where we’ve gotten with Jamie. Okay? So this is different, this does confuse people. I think the other thing that confuses parents is they don’t they just don’t realize the depths of communications that we’re able to get out of Jamie and that, hey, we’re not the only one, so I just want to be clear. I think if you read the book and you start to read his words you’re like, Oh, okay, now I get it. This isn’t like a kid who can like spell a word here and there to get a need met. This is like fully formed adult with a beautiful mind able to express all his thoughts that’s what we’re really talking about.
– Let me ask Jamie one more question. I love reading about just AMS and I’m like both JB and his wife were college athletes and sports at very high level lacrosse player. What’s your favorite part of having the same home?
– you got smile, thinking about your bro. Go ahead
– [Voiceover] He makes me laugh.
– Oh, that big smile. Bobbie, can I just ask real quick question for parents? What can we maybe legally do to get these organizations to shift?
– Yeah, so a couple of things, first of all, if you wanna find a practitioner go to i-aac.org international association of spelling to communicate, i-aac.org. There’s more practitioners being trained every day. They knew this book was coming out, they’re like trying to catch up. I think that what’s gonna need to happen is that parents are going to need to submit expenses for spelling to communicate lessons to insurance. Insurance is gonna deny those expenses and then they’re gonna need to sue them. And then that’s gonna force litigation to prove that this is a valid method. We have science out of the University of Virginia about a year ago, it was an eye tracking study that affirmed very clearly scientifically published in nature that it’s the children choosing the letters, okay? So this was like the first of its kind to silence the doubters. Again, I don’t wanna spend my time that way but I think that’s going to have to happen, the method needs to be validated by the insurance companies so that they will pay for this and for schools as well. And so I don’t doubt for a minute that it will take litigation to get to that point.
– You agree with that, Bobby?
– He answered that question.
– Somebody says here, I also highly recommend Ido book, Ido in autismland. So I mean, this is what’s amazing, Jamie is not a pioneer, Ido is a pioneer. He did a method called RPM which is similar to STC that we didn’t do but that many parents swear by and I think that’s, what’s really important. People are figuring out ways to get to these children. And then people like Ido, he went off to college and wrote a book. He’s just like Jamie, meaning he’s a speller and a non-speaker these beautiful stories exist for years past. All we’re doing is maybe getting this out a little bit broader into the community but we are not the pioneers of this. It’s amazing to me that I didn’t know about it or that I didn’t understand, not just the applicability but the scale of what we were talking about. So I wanna make that point clear to here. ’cause there’s a lot of RPM parents who’ve been doing this for years and you know, their voices and their kids’ voices deserve to be heard. Can I read one comment that I saw that I really liked? Sorry, I’m just scanning
– Sure, sure.
– Yeah, so we’ve got a bunch of comments now, which is awesome. And people are saying left and right, like, hey, we’ve got a spelling group, we’ve got a bunch of spellers. I mean, I’m telling you, this it’s out there, really sorry I’m just–
– Just after my interview alone yesterday there were people contacting me, talking about their child that has gone through STC and it’s working and amazing and–
– Yeah, I mean, again we’re never claimed to be the pioneers. I’m just telling the story we have but what’s amazing is you can go validate it with so many other people. Like here we go. This was the post I was thinking of, we have a whole group of non-speaking spellers on long Island. They’re brilliant and I believe there are many thousands of them at the very least. So Elizabeth Vossler says 1500 to 2000, I don’t know that’s a data point worth gathering. My son is one of them we didn’t find out until he was 19 five years ago. Totally life changing. This is obviously our experience too. We use RPM developed by Soma for her son, Tito who is now authored several books. But all these programs all work off the same premise, presume competence, so beautiful it’s happening and again, once it happens to you you just want every other kid to have the chance. So it’s so cool for me to know that there’s a whole group of these spellers in long Island, ’cause I can tell you that for community, all Jamie wants is his dude bros. He likes to be with other spellers just like him.
– Well said, well said, well with that do you guys want to wrap it up? Jamie’s probably like, yep.
– Oh yeah, yeah, he’s enjoyed these interviews a lot and he’d also like to get back to like hanging out at the ocean we’re on spring break right now.
– Thank you, Jamie for again helping change the world along with JB and Bobbie, as I’m looking at the computer and looking at you guys going, I’m so grateful and so lucky to all of you, like honestly.
– You too Jenny.
– Thank you, “Underestimated” you guys spread the word shout from the rooftops. Let’s make some change. Let’s do it we can do it and make it a best seller. Why not, come on! Thank you so much you guys.
– I’ll just say it’s a really quick read and it was meant to be so if you’ve got two hours you can get through the book.
– Absolutely, spread the word. I love you Jamie.
– Love you too Jamie
– We love you guys, you know that so Jamie you wanna give wave? Yeah all right you guys. Jamie and I thank you guys so much, to all of the parents out there don’t believe the deniers, just give it a try for yourself.
– That’s right.
– Yourself always know the truth.
– Much love everybody. Okay, take care.
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