Thank you for being here on a Sunday, and I hope everyone's having a good meeting so far. My name is Frampton Gwinnett, and I work at the Medical University of South Carolina. I specialize in autism, and I'm going to talk today about autism and technology and how that relationship is quite complicated. I'm also going to pivot midway through the talk and discuss a novel intervention that I'm very eager to share with you called the Autism News Network, which is a social skills and vocational skills intervention aimed at adults with autism, making a lot of use of technology in the clinical setting. So I guarantee that second part of the talk, you're not going to get anywhere else. So I'm looking forward to that. All right. Is anyone here in training at all? Okay, you guys are in training? Yeah. I have a couple of friends here at this meeting that I've seen. It's just such a great reminder of when you're in training, it's such a tough time, a difficult time, you know, physically, intellectually, but the friendships you make during training are just unbreakable bonds. So hats off to you guys, and thanks to those people I trained with in this room today for being here. I also want to thank Dr. Sean Sadu and Dr. Kathleen Coth for this opportunity. Yeah, so we're going to get on with the talk. My disclosures are here, and the learning objectives that we're going to cover today include patterns of screen time usage in kids with autism and adults with autism, and contrasting those with typically developing individuals. We'll discuss evidence for technology used to assist in the treatment of patients with autism. We're going to talk about the unique risks of extended screen time, particularly answering that question, does exposure to screens cause autism? I think that's really a fundamental question in our world. And before we start diving in, I wanted to give a shout-out to an amazing webpage that was put together by the ACAP Autism and IDD Committee. It's a free resource. That link goes to the homepage. It includes a nine-video series. It includes recommended readings, recommended texts, toolkits. It's all in front of the member wall, so it's open to the public. You do not have to be an ACAP member. Feel free to share that. And it's a resource that's cultivated and curated by our committee, so it's really like a living website. So we have all kinds of good stuff there, so please check that out. Getting into the heart of our talk, we're going to discuss the relationship between autism spectrum disorder and technology. And I mentioned earlier, it is complicated. If we go back in time, like I grew up in the 80s, we had computers. It was exciting. We had like the Apple IIe and Commodore 64. These are like dinosaurs of the computer age. But they were around, and we had the Atari game consoles and Coleco, and I'm trying to think of a couple others, like a Sega. But those were kind of on the periphery of our lives. It was kind of a time when cable TV was just kind of hitting Main Street, so we were excited to have more than four or five channels. We did do a lot of things outdoors. So the hub of activity when I was growing up in the 80s was running around the street, playing tag, chasing each other on bicycles, you know, trying to capture frogs or whatever we're trying to catch, you know. So that, it was really an outdoor-based thing where you're coming home, you grab a snack real quick, and then you just go outside and just tear it up until dinnertime outdoors. Bicycles, spontaneous activities like jump roping, all that. And of course, reading was a big factor with our academics. We carried heavy book bags with, you know, no tablets, no laptops, et cetera. So that was kind of a picture of where we were in the 80s and probably most of the 90s too. And then in the early 2000s, and especially in 2007 with the invention of the iPhone, things changed drastically. And I think in general, you know, physical activities are still there, but they're much more structured. It's not a spontaneous outdoor play. The unstructured play outdoors has kind of gone away. You know, there's no more, kids don't take the school bus anymore hardly. You know, we used to start games at the bus stop, playing freeze tag until the bus came. You know, now so many children are dropped off from home to their school. When they play a sport, it's okay, we're going to drive you to swimming, we're going to drive you to gymnastics, we're going to drive you to volleyball or basketball, whatever you're doing, and then we're going to pick you up, bring you home, feed you, homework time, and so forth. It's very much, the sports are there, but it's kind of structured. It's on the periphery a little bit. And then if you look at the use of technology and screen devices, it's really a heart of what the kids do, even before COVID. They were on iPads at school. They were on laptops. The teacher's chalkboard is long gone. They're using smart boards, et cetera. And those have, in a large part, been a win. But there are even more devices now than we could imagine, where we've got wearables, such as the Apple Watch, and it's kind, and as well as virtual reality, which hasn't really had a massive breakthrough yet, but probably is coming. And then, of course, social media, where it's like, not only do you have a smartphone, but you have access to your friends through smartphones. So we saw that a lot during COVID, and I've seen it with a teenage daughter, where the drive or the desire to drive a car has been almost extinguished, to a large part. Many of us in this room grew up, the car was our ticket to freedom, because the only contact we had with our friends was on a phone with a very long cord, hopefully, that you could drag to your room, drag to your sister's room, and then we had the cordless phone. Where is it? Who's got the phone? But there was one line. There wasn't social media. So we didn't have access to our friends. So the first chance we got to be out and be free, we took that, and we were chomping at the bit to get our permit and our license and so forth. And I had my daughter tell me, she was very logical and rational, and I said, honey, are you thinking about driving soon? Are you 16 and a half? What's going on? She's like, well, dad, why would I go and get my license to drive when I can just have you drive for me? And I was like, whoa. I was like, that sounds super rude to me, but she was just being logical. She's like, no, I can sit in the back seat and be on Instagram, and then you drop me off and I'm anywhere I need to be. And by the way, I had access to them before I got together with them in person. So everything's changed, as you know. And while that really revolution has happened, there's been a coinciding increase in autism prevalence. This is the latest CDC data. We'll get another refresh of that data in 2025. But for now, it's 1 in 44, 2.3% of children overall and an even higher percentage in boys. So that's overlapped with this explosion in technology and the exposure that kids and adults have. So the big question is, well, first of all, the things we get questioned about most is, is there really more autism or is it just we're finding it better? Now the party line, the official answer is we are finding it better. We know that. But I think common sense would tell all of us that there's definitely more of it around than when we grew up. I mean, I remember in my class, it's like, OK, there might have been one or two kids that you think back, and like, probably on the spectrum, definitely on the spectrum. But now, almost 3%, over 3% in boys. We're seeing such a huge increase that we've got to start thinking about, is it just diagnostic acumen and awareness? Or is there something else going on? Some interesting possibilities, and I've got question marks at the end there, that may disappear soon. We know awareness has increased. We know that screening has increased. Diagnosis is better than ever. But we also know that parental age, as it advances, there's higher risk of autism. So as you add 10 years, there's a 25% chance higher that you'll have a child with autism. My mom had me in 1973, and she was 23. And that was pretty much normal. She left college, got married, had a kid. That was pretty standard. Now, 23 would definitely skew early, especially if somebody went to college and grad school. So in basically 50 years, we've seen people now, it's almost like, well, 33 is a good time to start having kids. And then you have your second one at 36, and then you're pretty much done. So that change, that pushing forward, about 10 years happened overnight. So in the course of human history, within 50 years, all of a sudden, we're pushing child birth back from 23 to 33, that type of phenomenon. So we know advanced parental age is a factor, genetic factors as well. It's tough to argue that genes are changing too much, but there is a phenomenon Simon Baron Cohen and others have put forth called assortative mating, where you talk about selection of partners. So if you think about people you have partnered with, for example, the chances are there's a lot of docs in here. Maybe a lot of partners are also docs. It's not like we necessarily married people that we grew up on the same street. A hundred years ago, we would partner with people who went to the same church, same zip code, an agriculture society, or if it's city-based, somebody close by. Maybe somebody you went to school with, but certainly we're seeing selection, high school graduate, college graduate, grad school graduate, professional, doctors marrying doctors, IT marrying IT. So that kind of selection could have an impact on prevalence of autism. And there are some, Dr. Baron Cohen's published on looking at Silicon Valley type regions and seeing higher rates of autism traits in the children of engineers and college professors and so forth. So that's interesting. We know perinatal complications, almost any perinatal complication you can think of as a doctor raises the risk of autism. And then there's like true environmental factors, like things that are out there in the air or in the water or in the soil. And we are seeing pretty convincing evidence that air pollution, pesticides, even outdoor light at night, what I consider not technology per se, but industrialization or modernization, we're seeing that have an impact on autism prevalence, which is just, it's hard to escape that. Like how do you get away from air pollution? How do you get away from pesticides? The outdoor light at night is interesting. There are some studies in China where they looked at six-year-olds in one county and they realized that children who had less darkness around their home at night had higher rates of autism. And the theory is that melatonin is decreased, hormone production changes if you're in darkness versus light. And that byproduct of industrialization could impact a child's risk for autism. So pretty interesting. Now electronic screen media, where does that possibly fit in? We're going to get to that. That's the question really, the first half of the talk, if does exposure to technology or electronic screen media increase risk of autism-like symptoms or traits? Short answer, yes. Okay? The data is pretty, is strengthening on that. This is a picture from yesterday on the street in Manhattan. This kid is definitely not four. I would say like two and three quarters, maybe three and a half max. But it was one of those things where you're walking down the street and you're like, is anyone with that kid? And then I realized that that guy there was her dad, but for a while he was like 30 feet away, 20. And this kid's just walking down the street with the phone, his phone, doing something, probably YouTube, maybe a game. But this is normal. I mean, am I guilty of that? You guys, of course. You know, kids, kids want it, they pester you, you hand it to them, calms them down. But what's, I think the take home point from today's talk is going to be try to minimize early exposure, especially before three years old, and try to minimize extended exposure, especially before three years of age. So what is the risk? And I think there's definitely a pattern here, or a theme where, you know, in the 40s, in the 50s, you know, people smoked and they didn't know, you know, you had doctors doing ads for Carlton cigarettes or what have you, like, Carlton's the, I recommend, you know, this cigarette. We didn't know, and then the data came out, things changed, and the association to lung cancer and other, you know, morbidity and mortality. Then let's say in the 60s, 70s, and 80s, kids would drink a lot of soda, and then we put together that, hey, maybe that's not a great idea, and there could be a link to pediatric obesity and adult obesity and diabetes, metabolic syndrome, and so forth. So that's, at least on the radar, debatable whether things have changed, but then we have this other scenario where we're in a very large social experiment because, you know, Apple and others pushed out these amazing inventions that were just true breakthroughs, and yet nobody questioned, you know, is this a great idea? It just kind of happened. It's like, well, let's make apps for younger and younger and younger kids, and they have those little seats, they have those round, they have, like, balls that you can sit on in Apple stores, and the kids sit there and bounce on them when they play. They get indoctrinated very early, and there's nothing to learn because it's so intuitive for them. So what is the risk of that? The data is really firming up now that especially among boys, longer screen time at one year of age, significantly associated with autism at three. I think for our patients, you want to say try your best to avoid long and early exposure to screen time, okay? So we could beat this drum for a long time, but that's the upshot of this. I do know families who don't have cell phones by age 12 and 13 and 14. That's really, those are outliers, and they talk about how kids will spontaneously play and make up games and so forth, and that's fantastic. It's such an outlier now. I think our best hope is to monitor and try to limit the amount of screen time in young children. Now, technology is not all bad. It's really two sides to one coin, and I'm going to talk in a moment about some of the benefits, how technology can be part of clinical interventions, but there always needs to be a human element, I think, so that you're not just turning the technology over to the patient and saying, use this and you'll get better, kind of like autopilot in cars. This can be very helpful, you have your lane chain assist, change assist, you have blind spot warnings, you have automated adaptive cruise control to prevent rear-ending for somebody. Those are fantastic, but you can't take your hands off the wheel and take a nap, so there needs to be that human element combined with a very powerful technology. So some of the potential benefits include technology being attracted to kids, and it can help with social skills, joint attention, it can promote language development, especially with iPads, where a kid is using the iPad, touching a picture, it says Apple, he says Apple, and you're off and running. Now the potential risk of that is it can be used non-socially, like in an isolating way. Kids are exquisitely vulnerable to cyberbullying and social media disasters, especially those on the spectrum. With repetitive behaviors, because they like technology, you can get an in with them, so that if it's a math tutoring app, well, they like computers, so maybe we can get the math in there with the iPad app and take advantage of that synergy. But also they can have difficulty, because of their repetitive behaviors, like detaching. If you ask them to put the iPad down and engage in non-perverted activity, meltdowns can occur, lots of irritability, there's risk of internet addiction as well. In terms of cognitive impact, as I mentioned, it can help with learning, help with executive skills, help with organizing, but also there's potential risk for developing ADHD from being on screens too much, and also the physiological effects of decreased sleep are very real. So in a nutshell, this is a screenshot from an article below Westby et al., and I just screenshotted it because it really encapsulates about 12 slides that I could have gone through. Too much screen time can impact language, can bring on ADHD, oops, sorry, I don't know how I skipped like 10 slides there, there we go. Sleep problems, poor ability to read facial cues, increased aggression, poor self-regulation, it could even impact food choices, exercise levels, therefore obesity, sleep, on and on, and screen addiction. So lots of reasons to be concerned, and it is dose-mediated, of course, and then just wanted to point out on this slide that the way kids and adults with autism use technology is different than typically developing individuals. They have more TV, and the gaming is like twice as much as typically developing individuals. So in my autism social skills groups, it's like I have about a third of them that in group go by their online handle. So one of them is SubZero, another one is Zephyr Blaze, another one, you know, so like it's actually replaced their name in group. Can you just call me Zephyr Blaze, for example? That's my handle, and when I game, it's like part of their identity. So tons of emphasis on gaming in this group. I think as a clinician, generally it's a good idea to at least ask them some about the quantity of their screen media use and some about what are you actually doing online. A lot of times I like to get into, okay, you're on a Discord server, you play Roblox, you play Minecraft, you play Fortnite, whatever it is, and you're getting at, if they spend a lot of time doing that, it's very likely that a lot of their friends are coming out of that activity. Just like for us, you know, we didn't have autism. A lot of us when we grew up, if you look back now at who you're friends with from high school, it's probably somebody that you were in a club with or played a sport with, had a lot of similar classes. Maybe you lived near them, but more than likely it's that you did some activity with them. And I tell a story about how I went to Chicago for a concert, and we ended up seeing the concert and talking about baseball a lot. I haven't played baseball in 30 years, but I give that example to my patients to say the guys I still hang out with now, 30 years later, were guys on the baseball team. We went to the same school and we played baseball, it's two things. And then 30 years later, we're still friends, but none of us play baseball. So when you're looking at a young adult or a kid, those activities are so important. If your source of friends is Roblox or Fortnite, chances are they're not in real life friends. That's concerning to me. And I just wanted to say, in real life contacts, to me, are worth a lot more than online-only contacts. So one's gold, one's silver. But that's my personal, I'm a little old-fashioned on that, the data may disagree, but I think you need to know somebody in person to really call that a true friend. You can put up a front online, we all know what can happen online, but somebody you hang out with in person, do things with in person, to me, I'm still old-fashioned, that's a friend. So quality digital content, we just got to think about things that are engaging, things that you can be actively involved mentally while you're doing it, things that you can share with other people, things that mimic social interactions. My next slide, this is before the fall of Bill Cosby, but in the mid-80s, was anyone around when this was the number one show? So what did people do Thursday the 8th? It was like, we've got to finish dinner, because Cosby's show's coming on, and literally the entire country was watching it, and it was a family show, our whole family watched it all together, and then the next day, we would go into school and talk about the Cosby show and how funny it was. I mean, it was hysterical, and that had a lot of, we were connecting, we were watching it together, it's not like we sat in the same room and I watched Instagram while the kids watched Beverly Hills Chihuahua 3, and then my wife was, you know, taking a nap. Like this was something we were all engaged, all together, you know, sharing that experience in a quality program. So that is pretty rare now, but we have to, like these days, movies like Miracle, which is a Disney movie about the 1980 hockey team, like those types of movies where it's like, okay, this is a cool movie that we can all watch and like, even with teenage daughters. Thinking about those types of experiences, there's another one on Netflix, like Murder Mystery with Adam Sandler and Jennifer Aniston, you know, funny things where it's like, as you have teenagers, you can all enjoy the movie, and that way nobody's like checked out while it's happening. That, to me, is like quality screen time, and the literature shows that. Okay, so we're going to talk about interventions a little bit. Again, technology is coming in and having a massive impact on behavioral therapy in autism, but it doesn't discount the human element. I alluded before to some of the ways iPads can help, social skills, behavioral interventions, communication like language, learning words, learning math, and adaptive functioning. Wearables have addressed one of the scariest things in the field, which is wandering. So the location of, on the watch versus the phone, you can know where somebody is, you can see exactly, you can ping him, you can talk to him through the watch. So this has been a huge breakthrough in terms of safety. But there's also other ways that wearables can help, like looking at physiological monitoring of neonates or pulse, measuring anxiety, you can even, there's some behavioral interventions where you can send them a text and the child sees it on their watch and they get an instruction, like go approach that little boy at the tree house and see if you can use your words to strike up a conversation, and the child goes and does it. So that's a behavioral intervention in real time, like in the wild. So pretty good stuff on wearables. I have a video now, it alludes to virtual reality or augmented reality, and it talks about driving, which for adults with autism or adolescents, it's a very tough task because it involves a lot of concentration, it causes a lot of anxiety, and yet it's such an important part of our independence in our culture. So there's a program at Vanderbilt that is using technology to assist adolescents who learn to drive. Here we go. He's 16 years old, a junior in high school. So what are we doing today? We have another driving session. Brandon Roberson will test drive a car without leaving this lab. Let's adjust the chair so that it's comfortable for you. I have very high-functioning Asperger's with a combination of pretty severe ADHD. That makes it so I can't focus on nearly anything. I'm pretty hyperactive sometimes. Before he starts driving, Brandon is set up for research. Brandon's car is this virtual reality driving simulator developed by Vanderbilt engineers. Are you ready to begin? Yeah. Here we go. Straight ahead. It has many driving scenes covering all the rules of the road in all types of weather. The light is green. And while driving, sensors are checking for changes in heart rate, breathing, and brain waves. We also need to measure their emotional states, that whether they're feeling anxious, they're feeling really frustrated, or really enjoying this and driving. A camera also continuously monitors Brandon's eyes. How often you take your eyes off the road, whether you are looking at the pedestrians or oncoming traffic. Straight ahead. Armed with that feedback, the simulator adapts to the driver, reinforcing proper driving rules. It is devices like this that could help fill the gap in teaching life skills to autistic teens. Brandon says the intervention is helping him. Things that I wouldn't notice in real life, the game picks up that I didn't realize it because of the eye tracker. And it notifies me of those things. And then I remember, oh, hey, I need to do that. Excellent driving, you completed another job successfully. So you might have heard him call it a game. So the researchers are calling it an intervention. And you saw the dollar sign where he's picking up points, but he calls it a game. So they gamified the intervention, which is really cool. This is another video, and it's about robot-assisted autism therapy. We could do a whole talk on humanoid robots and how they're assisting behavioral therapy. I'll let you see the video. This is really cool stuff. And it's coming on very strongly in terms of humanoid robots because of the way the kids with autism engage. Interactions with others are something that autistic children struggle with. That's where a robot called Casper comes in. British scientists hope it will help youngsters lead normal adult lives. Robots is very predictable. You press a button, the same thing will happen again and again. So there won't be any surprises. So we feel, we think that some of the aspects that attract them, they feel safe, and they like to play with the robot, is its simplicity and the fact that the repetition. Casper's been specifically developed to respond like one of us. It tickles me. The idea is that he is a simplified version of a human being. Understanding facial expressions are a challenge for little Ronnie Arloff, but Casper, predictable and non-threatening, makes deciphering a smile much easier. Happy! Yeah, happy. Casper is able to react happily when things are going well, but he's also been given sensors to teach the children not to be rough or violent. So if Casper is, say, struck on the cheek, he turns away, covers his face, and also tells the child that he's been hurt. That's important for kids like Eden, who have trouble reading social cues. So just a couple comments on the robot. You may notice that it has a very nondescript face, almost like a little bit of a Michael Myers mask-like appearance, and that's by design. Patients with autism tell us that when they look at a face, there's just a bombardment of sensory information. There's sound, and there's visual, and there's anxiety, and they're trying to read the eyes, but not stare at the eyes, and then they feel like they're being stared at when they look at the eyes, and then they're reading crinkles of the nose, and the edge of the mouth, and trying to, of course, hear the sounds, which are not, they're coming out of the mouth. So you're trying to read that, and so a lot of times, they just avert their gaze, because it's just overwhelming from a sensory standpoint. So that's the reason why that's such a nondescript facial appearance, and it's kind of scary, the amount of engagement that young autistic children have with robots is actually higher in some cases than with humans. So, but that's, again, like an in. Just a quick word about gaming. We've talked about some of the risks of it, but also there is something called serious gaming, which can be helpful for organization, like executive skills functioning, ADHD, and on and on. So this is another breakthrough area, if you just think of the term serious games. Okay, so we've come to the pivot point, and I just wanted to talk about, let's see if I can get a pointer out here. Okay, so we've talked about autism and technology, and in the upper right here, we've talked about some of the interventions. I'm gonna talk about another one momentarily that is called the Autism News Network, which uses technology in hopefully a novel way. We haven't talked much about social media, and there's just a couple comments here. One is Twitch is a super popular gaming platform where, for reasons beyond me, people play video games and record it, and lots of people watch that person play video games, and they chat and stuff. It's like, they'll do a three-hour stream of like, watch me play this video game, and they actually love it. It's, in some cases, like the hub of their social world can be Twitch. On YouTube, there are lots of my patients who are consumers, some that are creators, gaming platforms, some social media as well. I just wanted to mention that social media can be a near disaster or disaster many times. There's lots of cyberbullying happening. I think kids and adults with autism don't always realize the permanence of what they put up or how other people are gonna perceive the messages that they might post. So that can be a social media disaster waiting to happen. I also didn't mention much about autism diagnosis, but technology is gonna have, and is and is going to have a massive impact here. Things like imaging, genetics, looking at functional connectivity in the brain, looking at diffuse tensor imaging, video analysis of child's behavior. There's a program called Cognoa, which is FDA approved, where parents can send videos in to clinicians, clinicians watch it and also use AI to grade or score the videos and then get a consensus on whether the child is autism or not. That's all done through the phone, as well as parent surveys. So there's a huge effort here to find autism, find it quickly, and intervene. Eye tracking, of course, or measuring gazes are other ways. So, we're gonna go on now to this other star sitting here called the Autism News Network. And I'm gonna talk first about the clinical problem that this program is trying to tackle. First of all, this is a screen capture from a Google search this morning I did, where I just searched autism, did a screenshot. And you'll see that there's no adults there. And you can go scroll down and down and down and down and down, and there's no adults. And the perception in the world is that autism is a pediatric condition. And we know that that's not true. It's a lifelong condition. So that's the first clinical problem. And a lot of young adults, when they finished high school age schooling, they feel like they came to the edge of a cliff. And it's incredibly difficult to transition into independence, or into the work environment, or into post-secondary ed. That's the first problem. They're also very isolated, and that kind of doubles down on the way they use social media. Like, I'm home by myself, I'm in my room. I sometimes prefer that. I'm socially anxious, I'm gonna get online and kind of satisfy my social outlet in my room online. But in the end, in terms of quality of life, it's questionable, right? So, started off following kids in my practice, and I did a lot of social skills training, but they kept getting older and older and older. And I'm watching these kids who really had success stories post, you know, when they graduated high school, just crash and burn. So trying to think of how we could round them up. And we formed this program called the Autism News Network in 2018. And the idea was to fuse social skills training, like traditional social skills training, with technology. So we know they love technology, they're on it all the time. Can we take advantage of that and teach them how to interview people and film it? Take the film you shot, edit that, edit that down, post it to somewhere people would want to see it, and think about what do people want to see? What content should we make? And then on and on. So that was the idea, and the goal was to use the program as a way to get across that massive canyon. Sometimes it's better just to let them tell it. So this is a video we made two years ago, and it's kind of a reminder to me of like how far we've come in just two years, but let's hear what they have to say about the problem and the program. The thing about children with autism is they grow up. Adults with autism have very few work options that provide the support needed. This can lead to social isolation and low self-esteem. What if we had a place where adults with autism could grow their social skills? He probably wouldn't be here today. Develop their social skills. Be part of a collaborative team. Use technology. And produce original content geared toward the autistic community. Well, that's the Autism News Network. The Autism News Network is a unique social and vocational opportunity for adults with autism that can possibly unlock their full potential. We make videos and podcasts with exciting guests on our show. We get to share our unique talents, interests, and accomplishments with the audience. The content we produce shows the perspective of individuals with autism. What do you know about the ANN? I know a lot about it. I think it's the most exciting, innovative program that we have within our department at the present time. It's an extraordinary new initiative. So, it was like, exciting, right? We're thinking about making content that's meaningful to them, helping them tell their story. Also, connecting with people in the community who they're interested in, like the hockey team and so forth. We had a lot of wins. Just to sum up kind of who we are, what the mission is. The Autism News Network is made up of adults with autism, who are passionate about creating media content, and showing the world what individuals with autism can do. And we conduct film interviews, we meet up with exciting guests, and we edit all that content and get it out there on our site and our social media platform. So, there we go. So, I learned a long time ago in this program where the gold is, and that's to put them out front. To be honest, when I first started thinking about it, I was like, oh, well, I'll go up there and give little pearls about autism, you know, with all I know, which is not much. But quickly, it just felt like getting them out there, getting their story told is what we need to do. And I feel like the program at that point started to take off, and it was like, well, great, right? We had some good wins. I'm gonna tell you in a few minutes why it wasn't so great, and why we almost quit. But let's look at a couple videos here of some of the highlights before the big hiatus. What are your goals for the rest of the season? I was really sick at the beginning of the year, and I was struggling, but now, already since February, I feel finally great, ready, you know, physically. And the most, as you asked me, the goal for the season, of course, just to stay healthy. Like, healthy, to be healthy is priority, because everything else comes with this. I'm gonna tell you a little bit about my goals for the season. I'm gonna tell you a little bit about my goals for the season. Everything else comes with this. That was definitely a high point. This is Christina. She's talking to the mayor of Charleston. The quality here is a little uneven, but that was a good get for us. The city of Charleston, that's why it's so great. That sounds like a great opportunity. Yes, ma'am. That's what it's all about. Have you seen a change in the Charleston area in the last few years? I have. You know, we've grown a lot. People have moved here. Working a lot on eye contact and reciprocal communication. You know, we've seen a lot of businesses, like right here in this building, this is called the Charleston Digital Quarter Headquarters, and these businesses are very technology-oriented, like software and things like that. So the good part about that is that people who work here make more money. That's great. That's great, isn't it? So you can see that she wants to look away. We're coaching them up before the interview, like, write your questions, be sure you make eye contact, nod, respond, all these things. We're coaching that into them. And even just to get to talk to the mayor, it's really cool that he was willing to do that. We talked to the aquarium, and here's another example of Melissa. Hello, I am Melissa from the Altus Mothers Network, and I'm here with Whitney, one of the workers at the aquarium. Nice to meet you. Nice to meet you. Does the staff bond with the animals? Yes, they do, and that bond is really important, especially in a relationship where training is involved, like with our otters and our birds. That trust is there to make sure that they're able to train and build that relationship to get things done. So all of our otters, for example, are trained to go on and off exhibits, go into certain areas. So with that one, you see that Melissa's looking at her, smiling, that takes a long time to develop. And then the shots of the little stingrays, we had asked them, when we get to a set, run around and get B-roll so we can mix that in with the interviews, and then they combine all their footage and put it together. So a short little video, but like hours and hours and weeks of work just to get a two-minute video. See what this one is. Okay, so this is... Hey, I'm Christina, and I'm... This is Christina, who's like our poster child, and you've seen her before, but you're gonna see on this video three different steps of where she started and kind of where she was two or three years ago, and you'll just see tremendous growth. Let's see if I can get this going. Hi, my name is Christina Blake from the Autism News Network, and I'm here with the beautiful Laila Golan, the anchorwoman for Planned Parenthood, and we're gonna talk a little bit about Planned Parenthood. So Planned Parenthood is a non-profit organization that supports people with autism, and we're gonna talk a little bit about how they can get involved with Planned Parenthood. So let's get started. Hi, my name is Christina Blake from the Autism News Network, and I'm here with the beautiful Laila Golan, the anchorwoman for Fox 24 News. Today, we will be flipping the script where I will be asking her questions and she will be in the hot seat. So how does it feel being in the guest seat today? Well, you know what? I'm so honored to be with you, and I'm so grateful that you were interested in learning more about me, so I'm very excited to share with you more about my life and anything else you wanna know. So just a couple points about this. One, this was a huge win for Christina. She's extremely persistent, extremely driven. That's just been a joy to watch. The other thing that, that was about her third or fourth time meeting Laila Golan and, welcome, Dr. Yudhi, meeting Laila Golan, and this was the culmination of her relationship growing with Laila. So what we were saying is, hey, Christina, you've been on the show two or three times to highlight some of your projects, and she said, hey, Christina, maybe you wanna come back and interview me sometime? And Christina was like, I'm gonna email her and the producer and make this happen. So within three or four months, this actually happened when they had some downtime, and I said, you know, Christina, you're friends with Laila now. You have her email. Like, you've developed a relationship with her, and they hugged at the end of the interview. It's just fantastic. I think this is the one that shows the three different steps of Christina. Yeah. That one's not behaving. See how we do with this. I hope it works. Yes. Hey, I'm Christina, and I'm with the Autism News Network, and I'm here with Jamie and David at Bless for Dream, which is by far the best place to be. And I'm here to ask them some NFL questions. I come out every Wednesday and Friday for those that have gifted or special needs in terms of service from that standpoint. I'll get here in the mornings and go through early afternoons or something and be here. Do you think that people in general that you meet are knowledgeable and aware of autism? I think on the whole, yes. And as we get more and more out, they will know more about it. Yes. Hey, my name is Christina. I am 26 years old and I have autism, but that doesn't define who I am. I also love children and animals. Being a part of the Autism News Network is very special to me and has helped change my life in so many ways. Before being involved with the ANN, I wouldn't hardly talk with anyone, much less be on camera. Please stay tuned for more about my story, but in the meantime, please check out theautismnewsnetwork.com for our other participants' videos and podcasts. Thanks and have a good day. You can see the sense of accomplishment. So this particular patient of mine, she works so hard. So like, if you're thinking of like, oh, what a cool program. This is so neat. No, she is amazing. Her hard work has made this happen. Her determination, her follow through. Yes, like I work very closely with her and her mom actually attends the group with her because it just works better that way. But over, because we work so closely together, I can joke with her, I can challenge her, I can, you know, like if she's not there, I'll tell her that, you know, she doesn't care about anybody in the group anymore and she starts laughing, you know, like I can joke with her. But she went out and got her own laptop, she got the software, she started editing and she's just been a powerhouse. And then there's a contagion factor where other kids are seeing that and they're saying, I want to do what she's doing. So just want to give Christina a shout out and talk about her transformation is due to her. But then seeing her makes our clinical staff want to keep going and saying, hey, if we keep pushing, she's going to benefit. Let's keep going forward. Okay. So I told you about that hiatus. Essentially, about a year ago, this group imploded, okay? So we had about 16 or 17 people in the room, which was way too large, and it was just unwieldy. But I had always, and it was like a continuous group, an amorphous group. There was no, hey, we'll meet for eight weeks and we're going to accomplish this. It was just an ongoing, you know, growing group. And it was really tough to define what our purpose was. There was a lot of problems with boundaries, people touching each other inappropriately, you know, on and on, you know, professing their love for another participant, you know, in public, which, you know, again, excusing themselves, what did I do? Excusing themselves in the restroom on numerous occasions, not being able to stay in the room, not being motivated, social anxiety. The safety in numbers factor where it was like, hey, if there's 16 of us and only one or two people are going to do the work, well, I can sit back and just watch. So that was a problem. And we had a physical altercation about a year ago where one person punched another and threatened to kill them because there was a disagreement about whether Egyptian pyramids are a religious symbol or not. You know, it was very esoteric, and it just, it was unbelievable. And so after that occurred, we had one more session to debrief, and then I shut down the group for about four months and started thinking, I don't want to do this anymore. You know, it's, this is not what we set out to be. And Christina kept coming at me and saying, you can't stop this group. Like, this is, she's like, this is my life. You know, this is what I want to do. And, you know, you're just like thinking if one person could benefit, well, then is it worth it? It's like, yeah, of course. But we had to really make some tough decisions about what to do next. I mean, the idea when you start intervention, you're like, okay, we've got a cohort, and we're going to do intervention X, and they're hopefully going to get better. I mean, this could be inpatient or residential. It could be medication, social skills training, what have you. And what we were finding is that the intervention was fraught with problems, and the data wasn't even any good. We were checking clinical outcomes data and not getting anywhere. And that was frustrating and disheartening. So during the hiatus, we kind of confronted the fact that the outcomes data on social anxiety, depression, social skills, autism traits, sleep, everything just was like nothing, just flat. And the aggression was unacceptable. The group was probably way too big. And also, just three or four people who can't control their impulses or their attention span can really derail the entire operation. So we definitely thought we wanted to downsize, be more selective about who's in the group, and also define things better and have an actual purpose and a duration of the groups. So we moved to a more small group format where we start off with 10 or 11 of us, and then we break into four small groups with a pretty high clinician to participant ratio. So usually it'd be like one faculty member and then a student, for example. We also implemented the purple box rule where every device goes in that purple box. And I've heard all excuses and every excuse in the world. I'm charging. I'm waiting for a text from my mom. My ride's going to text me. You know, whatever. The dog ate my homework, et cetera. And amazingly, we used the purple box. I put it in a cabinet drawer in the chair's conference room where we meet, and then the devices start growing wings, and they make their way from the box across the room into the patient participant's hand every single time. I don't know how. It's unbelievable. I look around. I'm like, wait, how is that? You put that away, and it's back in your hand now. I'm like, so it's a constant battle that we have to fight. And it kind of gets to the beginning of our talk about how it causes distractibility and so forth. So that was a huge battle that we fight each and every session. I mean, I'm not kidding. Like, why can't I sit here with a headphone in listening to a YouTube video? I'm listening. I'm part of it. I just said something. It's like, no. Okay. They're using it to self-soothe or to combat boredom or what have you. No. Enough. Oh, and who's guilty of being on their phone probably most during the group? Me, because I'm getting pages and getting calls. But that's another story. So we went back to work last fall, and it was like, we're going to do 10 weeks. The goal is for everybody to do their own individual project with an interview of somebody outside a group. We're going to record it. We're going to post it, and that's it. And we'll try to put the wheels back on this program. And it was fine. It went well. And we decided that we wanted to continue in the first of the year, January 2024. So then the idea came up, well, what are we going to do? And I honestly don't know how this came up, but we decided we're going to make a movie. And we did. And it just came out April 25th. And the goal of the movie was to put them out front, focus on stuff that they want to do, which is tell their story, interview exciting people. This is Christina's mom right here. So she got on the flyer. And the content breaks down into about a third firsthand accounts, what it's like for me to have autism. A third of it is interviews with special guests, and a third of it was comedy. So you're going to see a little bit of slices of all that today. I think the first thing we're going to talk about is the firsthand experiences. So it's not like them talking to the camera. It's them interviewing each other about their experience with autism. Who would you say is the biggest supporter, your personal biggest supporter? My mom and dad. They supported me all my life. And Mr. Truelove, who got me here, and Dr. Gwinnett, and his team. And that's been the biggest part of my life so far. Very good to hear. My biggest supporter has always been my father. And he's been there pretty much throughout my entire journey, even through the point when both me and him lost my mother to cancer almost 20 years ago. And so it's basically been through me and him, not just through my own journey with autism, but basically both our journeys of the last 20 years, period, because so many ups and downs have been going around. And we've needed each other, whether it was just him helping me do stuff or me just being there to listen to him, and hear him vent, and comfort him, because it's a two-way street. A lot of people don't realize that when it comes to autism, support doesn't just mean professional support. It includes friends and family. And personally, it was very up until for even now, it's still hard for me to make friends, because I'm just more used to just choosing to be alone. And that's kind of productive, because that makes me angry. And that does kind of lead to some issues between me and my dad, but we always work through them. Do you have anything like that that kind of triggers you into doing something that you know you don't want to do or be, but you can't help it anyways? Yeah, like when someone would force me to do stuff, it kind of makes me resist. And when I first, at the beginning, I kind of had communication issues, where I also wanted to be alone and not be bothered by anyone. And over the years, I've been getting better at talking to people and communication and making friends. Yeah, it does take time. And sometimes it even happens by the time it doesn't fully happen until we're like adults, but it does happen. And we're just going to keep making progress until we can't go any further or we reach the point where we want to be. Yeah, that's true. All right. Well, thank you so much for watching. Back to you. Shadow Master is now leaving the building. So a couple of points there. I mean, they're talking to each other, and I don't know if you saw Cameron listening to the guy with long hair talking. He's looking at him. He did such a great job of listening, moving his head, but not interrupting. And then just a couple of side points. Like, as we make this movie, there's this phenomenon called autism, which keeps rearing its head. The guy on the right is by far the most irritable guy in the whole program. Yesterday, wait, no, Thursday, he stormed out of the meeting, came back, put his head down, shut down, left again, came back. Like, very up and down, very irritable. But as you can see, the bright spots, the highs are so high with what he can achieve. And then Cameron on the left, we have like one of those scan convenience markets in our building. And his parents called me a week before the movie came out to say, hey, we're pulling him from the program. He's been taking sodas from there and not paying for them. And we've reminded him not to do that, and he's still doing it, and we're pulling him. And I just said, this is autism, you guys. I see this kind of stuff all the time. This is not, because they were like, well, we didn't raise him in this type of home. I'm like, of course not, but this is autism. Please don't pull him. At least wait and see the movie. And they saw this and some other clips from Cameron, and they were just so touched about what their son could do. So I mean, these guys are just awesome, but they have a lot of clinical challenges. And so our role as a clinical team is to meet them where they are and kind of work through those. Another big change we made is just this really structured agenda, where we have almost every minute accounted for. You see each team has tasks and updated. And at the very bottom, we are coming together for the last 15 minutes to talk about, what did we get accomplished today? What are we doing next week? When we're in the small groups, we're brainstorming, scheduling, writing content for this movie, calling people that we want to interview or work coordinate with, thinking about planning the filming, thinking about equipment, thinking about transportation to get there. So there's a lot that goes on in each small group. And each small group was tasked, you've got to make one interview, one first-hand account for each person, and then also a comedy sketch or two or three. And we'll see a comedy sketch later. But again, after the small group meets with those specific goals, we come back together as a big group. And you can see, we've got eight clinicians in there. I mean, that's a high ratio. It's a big commitment. Some of them are students, but less than that, it's just really tough. It's uphill. The other thing I wanted to mention is that, in addition to our groups where our 10 or 11 people are meeting in prep for the movie, we had a separate weekly session for editors, where about 2 thirds of them would come every week separately for editing. And you can see that it's very, OK, this project. What's going on with this project? And we just run, like the first half an hour, we just make our agenda. And we set goals and say, by the time we get out of here, what are we going to get accomplished? Without that, really specific and concrete visual cues, it's just chaos. So we have about four or five laptops, and we break into small groups of editing. And the editing is extremely time-consuming. But they learn from each other. Or I might teach them how to do it, but then once they learn how to edit, they know how to edit. And they can teach somebody else. And before you know it, on this movie, they all edited their own stuff. And then my task was to put it all together, smooth it out, fix the sound, the transitions, and so forth. But it was really a phenomenal group effort. We learned a lot about green screening, was our first shot at that. Learning how to operate real cameras, because we mostly use iPhones. We learned how to switch between cameras in real time at the MUSC studio. It was a phenomenal educational experience for them. And I'm going to go next to another firsthand account. This is Melissa, also known as Broadway Girl, and Cameron, just talking about their walk with autism from the movie. Hi, I'm Cameron Sutter with Autism News Network. Hi, I'm Melissa, a.k.a. Broadway Girl, also from the Autism News Network. And we're here to talk about support. What kind of support have you had in your life? One of my biggest supports has been my mother. She's always been the most supportive when I struggle with social interaction, studies in school, sorts of things like that. She's always helped give me advice, given me pointers, encouraged me to not give up, be brave and strong. What about you? When I was young, I went to play group numerous times, where I began to communicate with others. And since 2021, I've been coming here to A&N to be a one-on-one communication and to communicate with groups, so that when I'm with some other person or in a whole group, we could come up with ideas for editing and much more. I hear they call you Broadway Girl. Why is that? Well, because when I was young, my obsession with Broadway began when I saw The Lion King on my 11th birthday. And then a couple shows after that, it was Mary Poppins and Wicked. And I became so interested in Broadway. I guess it's my life. So the opportunity to share their interests and talk to one another. The guy on the right, college grad, got an arts degree, working in retail right now. So you see really a discrepancy between the trajectory he was on and where he wants to be versus where he is now. We're trying to go after a guy like Cameron and say, hey, Cameron, you've got acting training and film training. Let's use that. And let's try to make this your career. We're a long way from being able to vocationally make this and financially make this happen. But we think that we have something very special. Also wanted to include that we talked to the mayor of Mount Pleasant, which is right next to Charleston. And we're making bonds with leaders in the area. And all three of these guys were just so jazzed to meet the mayor. This was one of their big interviews. And you can just feel the growth and the confidence that they get. And it's also really cool that community leaders are opening the door for us. Because we're a small program, but they're supporting us. We did an interview for the movie with Dr. Melvin Brown, who is on the MUSC board of trustees and will be the chair of the board of trustees. And he's just a phenomenal doctor and veteran and leader. And Nathan Subzero on the right did a great job interviewing him. We'll watch a little bit of that in a second. But I also was teaching them, saying, let's think about how Dr. Brown got here. One, he's on the board of trustees at this institution. Two, my kids go to school with his kids, so that's our other end. And then you'll see the third reason in a moment. That was a double interview where Scott, also called the godfather, talked to Dr. Brown. But let's check out that video. This, to me, was one of the most poignant parts of the movie. A lot of the focus of autism groups is on children. What about the grown-ups? Yeah, it doesn't just disappear. It doesn't. It doesn't. My biggest concern for my son, what hurts my heart is he's very lonely. I don't know if I speak for, I don't know if this is like a lot of other people with autism. But personally, for me, isolation is a major, major thing. Having Dr. Brown disclose that he has a son with autism, it was like, OK, guys, now we have three connections, where he has a heart for autism, he's at MUSC, and he also knows Gwinnett. So that's how friends are made. And so we've been building on that. And we hope to interview Dr. Brown again. Just wanted to say, yeah, a lot of times we're shooting on iPhones. We're shooting outdoors. This was when we were making a phony car commercial in the parking lot nearby. It's part of our comedy piece. Normally, I'm trying to get them to set up the shots, set up the lighting, set up the sound. Sometimes we have workarounds. We were shooting a comic sketch of Who's on First? And we realized, I don't know if you guys have watched it recently, but there's like 500 lines. It just goes back and forth, back and forth. They had like 10 pages of notes, and they couldn't memorize it. So we decided, OK, let's have the person in the middle sit at the table. She'll look at her notes, but then the other two guys will use puppets and read their notes off camera so that you can't tell that they're reading their lines with a green screen. I mean, it was just like problem solving, but still a really, really fun process. But then the question came up, the next challenge is, if we've made this movie, how do we get the word out there? This is something that's not easy for people with autism to think about, how would I promote a movie that we made? So we had to work on that, think about all the different ways to use social media, but then also go to people we know and ask them to watch it. So we went to a local 5K at the Charleston Digital Corridor, which is one of our partners. There's probably 500 people there, and the godfather and Christina walked around with post-movie flyers and said, hey, will you consider coming to my movie? And it's a massive growth step for them to walk around a crowded area with total strangers and go up cold calling and say, hey, I'm Christina. We hope that you'll think about coming. And of course, people are asking her questions, and she's getting excited. So that was just, I would have never dreamed that they could do that. And then the day of the movie, we went to the auditorium for the second or third time to plan out where is everyone going to sit, because they need to know that. Needs to be predictable. How is everyone going to take their bows? Let's do three, and then three, and then another three people. Let's everybody line up here and go there. But you could just feel the morning of when we were rehearsing that, that this was a very special day. It's almost like there's electricity in the air. They were so pumped up to have this movie. They're so proud and excited. We also gave them business cards the day of the film, and we got that step and repeat background. And the business cards were a huge hit, because it made them feel like they're a professional. They're part of something. Like the looks on their faces, I couldn't believe it. And they were just loving it. So that's just another thing falling into place here, where we're investing in them, and they're getting excited. And this is the day of, where you can see them in the front row, taking pride in their work. Christina gave a talk right before. You're going to see a snippet of that soon. And then this is when they were taking their bows. So just an exciting moment. But I wanted to play a little news clip that covered the event. It's just like a minute and a half. Check this out. The Autism News Network held a very special movie screening last night, allowing attendees to watch a film created by those on the autism spectrum as they share their stories and their perspectives. Photojournalist Michael Allison shows us how the project is enabling people to gain an understanding of autism through the eyes of those who live with it. I'm doing great, because we're about to put on a show for you. This is a film that was written, produced, and directed by adults with autism who are part of our clinical program here called the Autism News Network. We've been working on it about four months. It's a nice combination of social skills and learning new social skills and growing their ability to make friends and keep friends, and then also learning technical skills, like preparing for an interview, sitting down with somebody you just met to ask them questions. What was your favorite part? Getting to interview the people and putting it together. I love to do it all. This movie is one of a kind. It can never be duplicated because nobody has the amazing cast that we do, which is 11 adults with autism who are super talented, super creative. At first, I wouldn't hardly talk to anybody. Now I'm out doing interviews, talking to people, even though I still get nervous. I have came a long ways with this group and I want the world to be out more about what we do and who we are. So that was a pretty great night. And in the aftermath, the question is, you know, did the intervention, which was, I didn't realize it at the time, but we just made the movie to make the movie. But as I look back, I was like, wow, the intervention was making the movie. That was the clinical intervention. It was just like, we just set out to make this movie and we're like, I didn't realize it might actually benefit, the whole process could benefit them in a way that we could try to measure. So my department chair is here today and he taught me a very valuable lesson, which is I'm not a scientist. You know, I don't work on receptors and stuff, but I am a clinician and I'm trying to always prove that we can find new ways to intervene clinically that work. And so he's helping me grow my science. And we did a recent survey where we asked the kids, after you made the movie, did you not improve, improve some, improve a lot, or you never tried all these following skills among about 15 other skills. Green is good. And orange is, you know, improved a little bit, improved some. So we do see a signal. And again, this isn't blinded, randomized control data, but we do see a pretty strong feeling in the participants themselves that they made big strides in interviewing, preparing to interview questions. Like I'm going to interview somebody else. I have to get outside my own head to think about what am I going to ask this department chair? It's really a pretty strong exercise for them. Editing video content, working with your peers to achieve a goal. That's something they're not, they don't have a lot of intuitive skill with playing well with others. That's one of the major deficits of autism. Working with a third party, you know, talking to somebody outside the organization to say, we want to set up an interview. Or resolving differences with peers, which was our Achilles heel earlier. Boundaries with staff and peers. Understanding hashtags. Public speaking is another one. And then overcoming obstacles like low motivation and focusing. So we felt pretty good so far about that data. I mean, I hope we can publish that. It is what it is. But they all seemed, I was surprised there was so much green. The other thing is, we talked about loneliness. You heard Dr. Brown mention his 29-year-old son. The major concern for him as a parent is loneliness. We asked them, with your loneliness, is it the same, a little better, or a lot better? And most of them said it's a lot better. Just from making the movie itself. From where you were in January to where you are now in April at the time. How are you feeling? So we're really encouraged about that. I'm going to continue to look at the data and try to figure out how we can share the word about what we're doing. This is the dedication of the film. And we're dead serious about this. The film was not dedicated to the moms or anybody else. It was dedicated to the future members of the Autism News Network. So we're already talking about ways that we can reach younger individuals, people who aren't part of our program, who might be in the surrounding area or further away. But that's the mission. And then last, you guys saw a little sneak preview of one of our comedy pieces. I'm going to play Alien Ice Cream for you guys. This is one of our comedy sketches. Hopefully the sound is well, but it has subtitles. As you can see, we've had our eye on you for quite a while. How flattering. Cotton candy? Silk strings are better. I'm not going to lie. I'm not going to lie. I'm not going to lie. Cotton candy? Silk strings are better. Half baked? Why not all the way baked? Rocky Road? I prefer smooth streets. Häagen-Dazs vanilla? Häagen-Dazs? Anything by Ben and Jerry's? Leave your wife's boyfriends out of this. No Dairy Queen or deuces? What are you talking about? Based on your refusal to eat ice cream, we have come to the conclusion that you are definitely an alien. Maybe a trip to Gitmo will refresh your brain. Still don't get it, do you? No. Tell no one. I told you it wasn't me. So yeah, you've seen first-hand accounts, interviews with special guests, and then the comedy. We had a blast making it. If you want to watch it, it's up on YouTube. Click the link. That's the link to our website. I wanted to thank a bunch of people. Let me see if I can bring up my other. Hopefully I can bring this. Yes. There you go. I want to thank Dr. Udy, Dr. Sean Sadu, and Dr. Kathleen Koth, Dr. Roma Vassa, Dr. Jeremy Veenstra-Vanderwill, Dr. Rebecca Muley, Dr. Debra Dees, and Dr. Henrik Zakari. These are all great friends and mentors, and I appreciate everybody watching. It looks like my chair is approaching the podium, so I will yield. I have a couple of comments. Frampton doesn't even know that I've been asked to present this award to him from the APA, which is a great pleasure to do. I've learned a lot from Frampton, Dr. Gwinnett. I don't know if it's totally appropriate or not, but one of the things I first learned from him when he was developing this program, and I don't even know if he'd still say the same thing, but he said it's often kids on the more high-functioning area of the autism spectrum that have the most difficulty in terms of social situations in school and what have you, because if you actually have extreme severity, it's very clear that you have sort of a problem, but if you have a milder form, there are certain quirks and difficulties with social interaction that make it extraordinarily difficult for those students and clients within their school environment and what have you, and that, at least years ago, was the group that you were initially targeting to treat, and he does an exceptionally sort of extremely good job. In fact, I'm going to share an anecdote, but in 45 years of working with faculty members, both junior and senior and students and residents, I, in 45 years, I've never met and worked with a clinician who actually strives to be a research scientist, and I'm pushing to do that. I've never met anyone. I've never worked with anyone that's more dedicated, engaged, passionate, and empathic in terms of wanting to advance the care and treatment of a population that actually suffers a great deal. So, you know, 45 years is a long time. I've worked with a lot of clinicians, a lot of students, a lot of people, and he's right at UNO number one, so this award is congratulations to Dr. Quinette, and all I can say is two things. You need to continue to work in this area because it's extraordinarily important, and for any of you people that are in academic institutions and you keep trying to recruit him for your department, stop it. So here's the award from the APA congratulating you on your work. Thanks a lot, Dr. Yudy. Yeah, and we have time for questions. I appreciate everybody watching, and if you do have questions, the AV guys asked me to just use the mic if possible. Hi, good afternoon. Thank you so much. My name is Bernadette Grosjean. I used to work at Harvard UCLA, and as faculty there, I'm also a member of a group called Autistic Doctor Internationals. We're 1,000 physicians of autistic. We've been working, and it seems surprising, officially diagnosed, and we try, as it was just said, to discuss a board of people who would say the high-functioning aspect, who are very highly masking, particularly women, and who may, as a consequence, have a lot of burnout, depression, a high level of suicide, the second cause of death. So I'm very happy to see your work as a clinician, as a fellow clinician, and I'm also curious if, in your research or practical work, you're trying to determine some kind of a program, or how can you reproduce that with other services, because this is the problem. Indeed, adults don't have services or groups, and I'm curious how that will be part of it, maybe to work with different universities. And also, as you see, as a second part for these young people you've worked with, or adults, some group where they will become independent of the supervision of what you're doing, and university, and go from there. Yeah. Thank you very much. Sure, sure. Yeah, the first question, I guess, is if it's scalable, or if we could pollinate to another institution, and yeah, sure. When you were asking the question, I'm guilty of being in love with this cohort, and I just can't imagine having another group somewhere else. I mean, I'm sure it's possible. I need to think about how it could be, because that is the goal, is to find the next group. So yeah, and that's part of the reason I tried to share the recipe as much as I could today, because I would absolutely love other people to do it. There's nothing unique about what we're doing that can't be replicated. It's what I think, the only thing is that that group wouldn't have these kids that I've got now, you know. So yeah, it's definitely something to think about, and if I found another clinician who was in love with their patients, and I've worked with them a long time, I mean, they would have me at hello, you know. And then the second, remind me, the second part was? Do you think that maybe in the long term, they can create their own independent group? Oh, right. Yeah. There's like a question like Christina, like could Christina go and work at Fox 24? I think probably not, probably not yet. Like right now, her mom is with her and group with me, and it would be tough for her just to put her out in the wild, as great as she is, and just say, hey, go work at Channel 5. And I haven't found a network or even a company that inhabits autism enough to provide the support needed. Like there's big manufacturers in Charleston that always say, we want to hire more autistic individuals. I'm just like, you've got to, you saw like our, for instance, our clinician to participant ratio is like eight to eight clinicians for 11 participants. No company is going to be willing to do that, really. So the way I've conceptualized it is just to keep doing it from our institution and keep the support there. If things change, I would love it if Christina went out. I said, go work. The other piece that you run into, because I've always, when we first started this, I thought there's four aspects if we ever got any like real money, it would be a quarter to the kids to pay them, a quarter to cover my time, a quarter for better equipment, and a quarter for marketing, boosting posts and stuff. And when you start having those conversations with them, well, they say, well, I have SSI, and I get 700 a month, and I have Medicaid. And if I make too much money, I'll lose my SSI and my Medicaid. So they see their resources, their insurance, and their SSI as their ceiling and not their floor. And I tell them, okay, it's a tremendous floor, but it's a terrible ceiling. But the mindset is, well, if I lose my Medicaid, what am I going to do, right? Well, I'm like, well, you could make five times that amount and have retirement and have health insurance, but that's a big risk for them. So right now we're in that no man's land where it's like, well, they're doing this for free. And I am too, mostly. And it's like, well, it's like we're playing high school softball or college softball. You're doing it, you're thriving, you're not getting paid. I guess they get paid now, but could we ever go pro? I would love that. Like I would focus on this all the time. We'll see. Thank you for your work. Hi, I'm Leigh White. I'm a college psychiatrist. And I came in, when you first started talking about that program, I was thinking about it from a different angle. I work with a lot of young adults with autism or on the autism spectrum. And I was just thinking about a program they could watch or a website they could go to. And as I was watching this, I was thinking of particular students that would be really delighted to watch this movie and to watch these interviews. Yeah. So feel free to share that link and we're going to put it on a public post. That's been the other part. It's been like a reality check for us. Like my mindset is like patients first, patients first. Because if it starts being like, well, how about if I try to make myself a star? That's bad. That's bad. And trust me, my mind has gone there at times. Like, oh, we need to blow this up and get lots of views. The other thing is like gauging the program's value by subscribers on YouTube or Instagram followers. Because if I start going down that pathway, well, then the program's a massive failure, to be honest. We have 181 subscribers on YouTube, which is like, and there's people who have a million and they post the most inane videos you could ever imagine. Just can't even believe that what gets watched. And we're sitting here and making what I think is valuable and kind of the question is like, was anyone watching? I'm not sure. So it's always like a push pull in my head and I just kind of keep my eyes on them and I'm like, we'll be fine as long as I just focus on how they're doing clinically. Because sometimes it's good, sometimes it's not so good. Dr. Zakaria. Dr. Gwinnett, that was a great talk. Thank you very much. Thank you. I work in the sphere of addiction, so this is not the world I'm in, but one of the things that addiction does is a lot of patients end up in, you know, go to rehab, detox, and then when they come back out, the family wants them to reintegrate into the world. And that world is not the same world for them as it was maybe when they were younger. And so big stepwise transition is transitioning within into the world of recovery. And within the world of recovery, they find human connection, which is lacking for so many of the patients, and giving back to the community. And so when I was, you know, just this last two questions before was going out into the community and transitioning out of this. Why not? I mean, you dedicated this to all members of the Autism News Network. They need the mentors within the program to keep building, and I think in the addiction world, that's how it is. You go to sober living, there's no sober living that's not run by someone in recovery. Right. You look at all the sober companions, all the sober coaches, they're all in recovery. If you look at the doctors in addiction medicine, so many of them are in recovery because they're staying within the community, and they're giving back, and nobody knows it better. And so I think there is probably a way. Yeah, they don't make the big bucks. You're not making big bucks as a sober coach, or running a sober living, but it's a community that supports one side. Yeah. It's each other, it grows, and it connects. And you never know where, how it'll grow, especially with funding. A lot of the funding is through families. Yeah. Families, friends, doing an event, doing a 5k, bringing up money for this and that. So I think building the network from within, and hiring the members, and paying them, and validating what they're doing for the next generation to come in, and opening a spot for them, but without having to kick out the people already in it. So it's just another idea and thought, but thank you very much for this, and your work is amazing. Thank you. Great ideas. Thanks. Hi, my name is Michelle. I'm a PGY2 at UC Irvine. I really enjoyed your talk, by the way. Thank you so much. I did have a question sort of logistically about the filming process, editing process, writing process. I understand the people that are the kind of supervisors or clinicians, are they trained in like using video technology, editing apps, Final Cut Pro, like where do you get your equipment, and what kind of training they have? Sure, sure. So we use laptops. We kind of started with whatever my laptop was two years ago, like that one. I usually get a laptop every three or four, you know, and that's my last two laptops before this one. It's like, okay, we got three, and then we bought Final Cut through like an educational package through our institution. We use Final Cut Pro, and really, I was the first, I was the one that was kind of trying to learn it and teach one or two participants, and our clinical staff don't really do the editing stuff. So when it comes, that's when we have our separate editing meeting, that's just me teaching them how to edit while I'm wearing another couple hats clinically, but I pop in and kind of lead them. So I've had to kind of stay ahead of where our participants are with the edit, with respect to editing, to try to feed them the next, you know, skill set that they're going to need. But what's interesting is when we have students come in, like a PA student that we usually have pretty steady flow, or MP students, or med students, they're amazing at social media. Like I am terrible at social media because I don't understand why this video got five million views of some guy like, you know, throwing a ping pong ball at a cat, and then this one is like a really great message, but no one's watching, you know, or hashtags, or even the time of day. So that's been great to use younger trainees for the social media part, and like when we got tickets for this movie, like we had a student set it up on Eventbrite, like I don't know how to do that, so, but that was huge. So everything's sort of like clicking. So the, yeah, so it's been kind of a mix. Thank you. Thank you very much, everyone. Really appreciate your attention.

autism

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autism prevalence

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communication

education

Autism News Network

vocational skills

social engagement

video content

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