Children and Screens held the #AskTheExperts webinar “Screens, Students, and ASD” on Wednesday, October 14th, 2020 at 12:00pm ET via Zoom. The webinar featured an interdisciplinary panel of world-renowned experts, who shared the most up-to-date research on how to optimize virtual learning in kids with developmental disabilities and what is currently known about the relationship between screens and autism. The experts also provided guidance on best practices for media use and offered other practical tips through a live question and answer session.
Matthew D. Lerner, PhDAssociate Professor, Psychology, Psychiatry, and Pediatrics; Director; Research DirectorModerator
Meryl Alper, PhDAssistant Professor
Temple Grandin, PhDAutism Spokesperson; Author
Christopher FlintHead of School; Co-founder and Chief Creative Officer; Founder
Victoria Dunckley, MDIntegrative Child, Adolescent and Adult Psychiatrist; Author
Pamela Hurst-Della Pietra: Welcome and thank you for joining us today for this week’s Ask the Experts workshop. I am Pamela Hurst-Della Pietra, President and Founder of Children and Screens: Institute of Digital Media and Child Development and host of this popular series. Children and Screens is a leading convener, funder, and curator of scientific research and public education on the topics of digital media and child development. We are so pleased to welcome our interdisciplinary panel of world-renowned experts, clinicians, and researchers, who will share the most up-to-date research on how to optimize virtual communication and learning for children and adolescents on the autism spectrum. You will hear expert guidance on best practices for media use today, and we are particularly pleased to have a special guest with us, Dr. Temple Grandin, who will share her thoughts as a neurodiverse person, and her experiences with respect to screens and children. Our panelists have reviewed your questions and will answer as many as possible during and after their presentations. If you have additional questions during the workshop, please type them into the Q&A box at the bottom of your screen and indicate whether or not you’d like to ask your question live on camera, or if you’d prefer that the moderator read your question. I am happy to share that almost 600 people are registered today for today’s workshop so although we’ll try to answer as many as possible, we’ll just be able to address as many as time permits. We are recording today’s workshop and hope to upload a video onto YouTube in the coming days. Tomorrow you’ll receive a link to our YouTube channel where you’ll find videos from our past webinars as well. It is now my great pleasure to introduce our moderator, Dr. Matthew Lerner. Dr. Lerner is an associate professor of psychology, psychiatry, and pediatrics in the department of psychology at Stony Brook University and Research Director of the Stony Brook autism initiative. Dr. Lerner’s research focuses on understanding emergence and real world implications of social problems in children and adolescents, especially those with autism spectrum disorders. Welcome, Dr. Lerner.
Matthew Lerner: Thank you Pam and thank you so much for convening this panel today. As a- the great interest that has emerged over the last week has shown the relevance of the work of children and screens in the autism community is abundant. Briefly, as hopefully most of us here know, autism is a lifelong neurodevelopmental disorder that primarily affects the domains of social communication and restricted and repetitive behaviors. In practice, what this means is that many folks with autism struggle socially to connect in real world, in real time. This then means that the emergence of the era of ubiquitous screens has been incredibly relevant for this community, but that relevance has presented opportunities and challenges. On one hand, screens provide a medium for communication, for engagement, as well as for disconnection, when one feels overwhelmed potentially, that is much more widely available than at any time previously in history. On the other hand, you know there are potentially risks to over engagement in screen media over the course of development in lots of different ways and the utility of screens and perhaps even the greater engagement in screens among some folks with ASD means that those same risks may also be present for those with ASD and in some cases may even be magnified. So here today we have a spectacular panel convened who’s here to give you an array of perspectives across the spectrum, no pun intended, on what the strengths, challenges, opportunities, and practical implications of working with and of living in a world of screens with autism can be. So I am really quite pleased to be able to share this opportunity with you, with you all, because I think there’s a lot we are going to learn. Even in the pre-discussions that the panelists have had I sat there thinking gosh I wish I was writing this all down. Thankfully you don’t have to write this down! This is being recorded for you today so sit back, enjoy. Remember, the last half an hour is going to be a Q&A, which is going to be moderated by the wonderful staff of Children and Screens, so please stay for the presentations and stick around for the Q & A. Hopefully you’re all going to learn as much as I already have in the discussion that we’ve had thus far. And so with that, I would like to introduce you to our first speaker, Dr. Meryl Alper. Dr. Alper is an assistant professor of communication studies at Northeastern University where she researches the social and cultural implications of communication technologies with a focus on disability and digital media, children, families, and technology use and mobile communication. Dr. Alper draws on over 15 years of professional experience in children’s educational media as a researcher, strategist, and consultant including with organizations like Sesame Workshop, PBS Kids, Nickelodeon, and Disney, and has numerous publications, including awarded publications, in the domain of understanding how the digital world works for people today, including those with disabilities. And so with that, I will hand it over to Dr. Alper.
Meryl Alper: Wonderful, thank you so much and I will go over to my screens, slides here to share with you all. Wonderful. So I thought I would share with you all today a little about who I am and kind of what I do. And kind of the practical advice that I have to share with parents based on that work. Who am I? In my research I use ethnographic methods, like parent and child interviews and home observations to study the role of media and technology in children’s and families lives, particularly for youth on the autism spectrum. And this photo is actually one of my research participants, Oscar—which is a pseudonym, all the names I’ll be using are pseudonyms—three year old austitic child in his living room, taken of course at a time when researchers could still go into other people’s homes before the coronavirus pandemic. And what I really love about this photo is he is surrounded by different forms of media; you’ve got books on the floor, foam shapes on the floor. You’ve also got a TV remote that’s sort of scattered amongst the midst. And you also have a computer keyboard that is on a little text table, but it’s not attached to a computer, it’s just the keyboard itself. Oscar was really into words. Oscar was into words not only visually, but just off-screen, there would be a large screen, a large flat screen TV playing a kind of near continuous loop of YouTube videos related to letters and words. So in this kind of environment, both within a child’s home and an environment beyond the home, I try to take what’s known as an ecological perspective on child development and digital media inspired by the psychologist Urie Bronfenbrenner. That means that I look at all the factors that directly and indirectly shape media use: including their home life, safety of their neighborhoods, the influence of technology companies and their policies, etc. So I also keep in mind that children on the spectrum are both similar and different from their neurotypical peers in a number of ways. So in terms of similarities, they have gender, racial, ethnic, class, and geographic profiles and backgrounds that impact their media use just like any other child. And it is important to note, including here two photos of kids from my research, Amaya on the left and Orion on the right that, Black and Latinx children in the United States are pretty much absent from a lot of the research that’s on autistic kids and media use. A lot of it is done with white children, and a lot of it includes a lot of boys. We can talk about kind of gender differences in diagnosis, but the research that exists basically is not representative. So anything that we’re about to tell you is somewhat incomplete. Research–the thing I love about research–is that it’s an ongoing process; so while those are similarities, in terms of differences though, autistic kids can have specific but varying challenges with things like sensory processing, understanding and expressing language, following expected rules of social interaction and emotional regulation. So I’d like to provide some practical screen use tips for parents based on my research highlighting both the benefits and challenges of digital media for autistic kids including recreational use and also for the purposes of online learning. So I’ll break this down into 6 key developmental areas, the first being social development. The big thing here is to use media to help your child communicate and connect. So some autistic children may actually be more connected than ever to their classmates through video games with chat functions right now, especially those who might never have been included in after school play kind of in pre-COVID times. Other autistic kids may find that this sort of electronic way of communicating texts or Snapchats doesn’t replace the potentials of in-person encounters and the social cues that those kinds of encounters can provide. So I said that for parents, this is a time to really use media together; so things like family movie nights or multiplayer video games and whatever kind of cognitive level is appropriate for your child, but to use those kinds of ways of centering around media to promote social communication. So next in terms of emotional development, to be attentive to how the media can both stress and soothe. So children on the autism spectrum can be very empathetic, so much so that the news might be and everything that is going on might be emotionally overwhelming right now. Others might express emotions in a more reserved way but are choosing media content that is helping them process experiences of disruption and change and this might especially be true for non-speaking kids or children whose kind of expressive language is difficult to express. So media can also be a way of communicating that inner state. So it’s important though to help children learn of course how to regulate their emotions in ways that don’t always involve the comfort of a screen, but to recognize the emotional valence that screens may have. Cognitively, it’s a time to help kids become critical- autistic kids become critical thinkers about media and technology. So some autistic children have the ability to fully grasp the complexity of what they see and read online, while many others might not understand the content that they’re watching on YouTube is an advertisement or what is or isn’t appropriate to post on social media. So one tip I think is to meet your child where they are through their personal interest and to watch things or scroll together and explain what might be confusing for them. Next, in terms of behavior, is to set reasonable boundaries around the media but to give your kids an active role in that boundary setting. So the media can provide a sense of routine, a very comforting routine, for autistic children who thrive with clear schedules and plans. But some might be very sensitive to excessive media use regularly impacting their ability to self-regulate or transition to non-media activities. To help with this, involve your kids in making predictable and safe choices about their media and technology use while respecting their agency and helping them to learn to make good decisions. Next, in terms of sleep, consider how media can both work with and against a child’s sleeping habits. So autistic kids tend to have non-normative sleeping habits to begin with. So right now, for example, thinking about online school, not having to keep the early schedule of school by attending classes in person but instead online, might actually be a relief for a lot of them right now. That flexibility might be something they, and their parents at least, have been craving. So here screens can kind of help with working around sleep. But of course, if you think media, for example, before bed is making things worse, then it’s really time to think about small iterative changes about developing new routines especially during these kinds of unstable times. The sort of sudden or non-incremental changes about sleep and screens could also be particularly disruptive as well. Lastly, creativity. So, to give autistic kids large canvases, both physical and digital. Some autistic kids have amazing artistic skills, so big stretches of free time and supportive adults at home right now potentially might allow them to work on some great things. But even for kids who have screens, that’s not the kind of place to always go, or also just plenty of kids without internet access or screens beyond just a mobile consumption device. Thinking about those paper-based ways of building and world building that those kids might crave, but non-screen ways of doing that with these large stretches of time. One last thing to say is that I’m finding in my research that a lot of the advice that parents of autistic kids get—especially from clinicians—tends to focus on their child’s media use. So rules, or how to talk about media; and that’s what’s known as direct parental mediation. But modeling and the example that parents themselves set through their own media use what’s known as indirect parental mediation is also really important to reflect on, especially if kids are sort of focused on modeling. In what ways are they modeling screens kind of at dinner or screens during the same things that they’re told not to do. So to close up, thank you so much for letting me share these insights which I hope provide just a sort of a little bit of clarity but of course not enough time to really get into things. So if you’d like more information written a bit about these topics on the left there’s a report called Digital Youth with Disabilities, that’s a report that was funded by the MacArthur Foundation, that’s available as a free PDF online. I’ve written some other things as well, but if you would like more information I’m on twitter @merylapler or you can go to my website merylapler.com. I hope the conversation here is useful although I have to hop off, I’m sorry, at 1:00 pm to go to another one of these zoom seminars. But thank you very much.
Matthew Lerner: Thank you so much Dr. Alper. There is so much rich information that you shared there. It is particularly notable that much of the practical advice that Dr. Alper is sharing, and this is hopefully going to be a theme for today as well, is very much in the domain of the sorts of things we would share with many parents in general regarding the ways in which their children learn, the way the screen exposure affects their learning, and things like sleep and the way that parental modeling impacts children. I think that this is such an important topic as I think there’s sometimes a misunderstanding in the community that because somebody is autistic and might really love their screen media or may be extremely attached to their screen media, that that somehow means that the ways in which we can help or the ways in which we might work or even support that child are going to be so radically different. But of course, people are people and people want other people and want to be and want to, you know, feel enmeshed in their social and emotional environment, including, often, especially autistic individuals. I think your point particularly, that many austic folks are not just empathic, but often radically so, and that screens can sometimes, the way in which that interacts with the perhaps overwhelming emotional environment that they’re in is so key and often I think underappreciated in the field. So I had lots of thoughts on that. We also have time for a couple of questions as well before we move onto our next speaker. So back to you: If you had one healthy screen habit—this is a question from the audience—you could share with parents regarding their family’s technology use, what would it be?
Meryl Alper: Looking at the research, what is something that we know overwhelmingly has a potentially negative effect is whats known as background television. So that’s kind of having the TV on and nobody’s really watching. So the ways that that impacts children’s free play, the way that that impacts children’s cognitive processing, their expressive language; but it also goes back to parental mediation, impacts parents because then they are not also communicating with their kid, so that child-directed speech. So wanting to contextualize that but the autism twist on that is that background television or background noise or white nose is part of a broader sensory suite of young autistic people. That’s where the kind of advice that is generally good and then autism is especially is specific. But there are some kids for whom if you take away that sensory comfort then what else replaces it? So understanding that background TV, while we know research wise can have all these negative effects, then what kind of sensory experience might that kind of noise or visual kind of effect might have? So I think to kind of point it to somebody else’s research, there’s a professor Kris Harrison at the University of Michigan who’s written about what she calls sensory curation or media sensory curation and gating and the ways that media, if you kind of take it away and they have a meltdown, is that- how much behavior is linked to the sensory mode that particular media might be supporting them from? So thinking about the senses, I think people like OTs, occupational therapists, have a lot to add to these kinds of conversation with thinking about the sensory components of media in relation to all kind of elements, sensory elements, of a space for kids, but in general background TV, if it’s on, not the best thing to have.
Matthew Lerner: Thank you that’s a very valuable piece of advice for all of us. As a parent, it’s helpful for me to hear as well. I’m sure as well for many other parents on the call and I think that also you highlight in your answer something extremely important about understanding and working with those with autism, which is the fact that many of the motivators that are intertwined with really anything, but I think TV and screen media in particular are intertwined. So I think that it can, I know the families you know that I’ve worked with, for instance, even in regards to this particular issue, it may not immediately seem that, for the instance, the sensory component is what’s driving the draw, or even the reduction of the regulation of the sensory environment is what’s making a child say that they need the TV on or really want the TV on. This is why again consulting with folks like OTs and getting that kind of insight and having some sort of guided experimentation as a parent with the guidance of a clinician can be so helpful, so you can capture and disentangle those things. Which, again, as a parent, you might miss in part because it really might be that Thomas the Tank Engine is genuinely motivating and that can also be true on top of the sensory demands. We actually have a minute for one more quick question for you before we move onto our next speaker. Which is: Are there any media platforms that are research supported and recommended by you?
Meryl Alper: Sure, so it’s a research kind of development platform and also a lot of research has been done on it. This is not a platform that is necessarily for all autstic kids but certainly kind of ones that I have seen who, and I always say this, it’s been- anyways, it’s called Scratch. Scratch is an online platform for learning how to computer code but in this really blocky language. So there’s been all sorts of research on kids with cognitive disabilities or intellectual disabilities using it and kind of adapting it for blind child audiences. It’s this platform that, and I’ve seen this in my research, it’s a place for kids to be able to creatively iterate on something. It’s also a community the ways that some of these kids prefer to socialize. It’s really adaptable. It’s also something as a community- basically you learn how to, you can code stuff but then you also make these projects; you make animations, you make games and you have other kids play them and it’s all very moderated. Scratch as a platform was developed by MIT, and so it’s spun off now as a separate foundation but MIT put all this research into it and also does all this research. Also, there is kind of a space on there where kids’ where autistic kids have posted videos, their animations, about how they have pride in being autistic or what it means to be a kid on the spectrum. They also created it by code themselves. So again, this is not all kids, but there is a wide array of the power of being able to express yourself. especially for kids for whom language in its traditional forms might not be the easiest way for them to communicate. So, it’s both kid friendly content because you can just view the projects, but you can also make it. So I would say that Scratch again, not for all kids, but from what I’ve seen in my research are some kids who really get a lot out of it, as a positive prosocial space that has adult moderators and that there’s research evidence behind it. It’s kind of I think maybe one of the only platforms I can say for that.
Matthew Lerner: Well Dr. Alper, thank you so much for your insights.
Pamela Hurst-Della Pietra: We now have Temple Grandin who is going to be coming on and so I just wanted to let you know that she was able to get on. She is getting on. Here she is!
Temple Grandin: Hi, how are ya.
Matthew Lerner: Perfect. So our next speaker is Dr. Temple Grandin, well known to many of us of course for her trailblazing work as a self-advocate in the autism community and her lifelong work in animal behavior. Dr. Grandin has provided remarkable, groundbreaking insights into both her own autistic mind and the perspectives of autistic people. She shares that knowledge with the world, aiding in treatment and support and understanding of individuals. And with that, Dr. Grandin the floor is yours.
Temple Grandin: Well it’s good to be here. I’m trying to fit things in between some other industry conferences I’ve been on. I’d like to talk a little about myself and then I’d like to open it up to a whole bunch of questions. When I was 3 years old I had no speech. I had excellent early intervention. My ability in art was always encouraged. Take the thing the kid’s good at, build on it, build it into a career. That’s something I want to see happen. We’ve got to control the video games. We’ve got to control that. Let me tell you what I’m seeing, there’s two paths: to the basement to play video games on social security check or do we get out and have a life. Too many kids are not learning working skills. The problem we’ve got with autism now, is you’re going from somebody who ought to be working at Silicon Valley or maybe working in a very high-end skills trade or an art to somebody who can’t dress themselves. And it’s all called the same thing. Now when I was a little kid I looked really severe, but fortunately with a lot of early therapy and I got pulled out of that. You’ve got to get these kids out doing stuff. I’m seeing too many kids are not learning working skills like shopping. They’re not learning basic work skills. I spent 25 years in heavy construction and I’ve done a lot of thinking about identity. My identity is a professor first, an inventor first. I was just in an industry conference and we were talking about some engineering stuff that had to be done. Okay that’s the sort of stuff that’s my basic identity. Autism is important to who I am but it’s secondary to career. Silicon Valley, half the programmers out there are autistic. They avoid the labels. Because I’m seeing too many smart kids, good grades, where autism is becoming a total label. If you get out there and you show the stuff you can do, and one of the things that motivated me to do the projects I did back in the 70s that were shown in the movie, was that I wanted to prove I wasn’t stupid and that I actually could do it. There’s different kinds of thinking. I am a visual thinker. I think in pictures. So I’m going to be good at things like industrial design and skilled trades, and I’m going to estimate that about 20% of the high-end skilled trades people I worked with designing big, complicated, Tyson and Cargill plants were either autistic, dyslexic, or ADHD. And I am saying that seriously, totally, totally seriously. Those kids never got a chance to use tools. I was using tools by second grade. The worst thing the school has done has got rid of hands-on classes. Now the thing I am not able to do, I can’t do algebra. I’m seeing that as a gatekeeper to screen kids out of things like high-end skilled trades. We are losing skills, let me tell you. We didn’t know how to build the Steve Jobs theater structural glass walls carbon fiber roof. It’s from Italy and Germany. And we don’t know how to build a poultry processing plant anymore. And there’s a connection between the special ed world and the industrial world. And I’m not going to say skilled trades are for everybody but for a lot of the visual thinkers like me it would be a really good way to go. Then you have the mathematicians, your pattern thinkers. They’re your programmers, your engineers.Then you got the word thinkers, they’d be very good at things like speciality retail selling cars. There’s been some real success in that, selling specialized business insurance, where they’re recognized for a special knowledge. We need all the different kinds of minds. Now just a few hints on the workplace: long strings of verbal information, that doesn’t work. You got to give them a pilot’s checklist to jog the memory. Because I got no working memory, don’t stick me on a super crazy busy takeout window. That’s not gonna work. What I’d like to do now is, while I get a drink of water, is just get a few questions. Get someone to ask questions either on the chat or just verbally. I’m going to get a drink of water real fast.
Matthew Lerner: Great. Thank you Dr. Grandin. I’ll kill some time while you get a drink of water. I’ll talk real slow.
Temple Grandin: That’s done.
Matthew Lerner: Perfect. So we had some folks submit questions in advance, so I’ll just pass them forward to you.
Temple Grandin: Okay great.
Matthew Lerner. Great. So one person asked, what can therapists and teachers do to help children who are having trouble focusing or controlling their focus to focus on the things that are needed by their parents or their teacher?
Temple Grandin: Well first of all, this is very general, and they find focusing on video games real easy and one of the things that got me interested in education was when education became a pathway to a goal, not just education for the sake of being educated. When I was in 3rd grade, I didn’t know how to read, Mother had to teach me how to read, and she taught me with phonics and I very quickly went 1st grade level up, 6th grade level reading. Find something that kid’s are interested in. So you’re reading about something they’re gonna be interested in like maybe cars or spaceships or dogs, whatever, something they are interested in. Also I got to get an idea of the level of the child. See the other problem we’ve got here, as soon as the kid gets a little bit older, you’ve got kids that ought to be going into engineering school or programming. And then you’ve got individuals where that’s not a reasonable option. You’ve got a spectrum that’s just so broad and that- when the kids get older they need really different services. So the first thing I ask is age, and then well, does he talk? What can he do? What can he read? Can he dress himself? Kinda have three different levels. You might have a kid that is good at math, why don’t you introduce programming? I talked to one family–mom and dad were programmers. I said well do you ever think to teach your kid programming and see if he likes it? It hadn’t crossed their mind! They’d gotten so much kind of in the disability mindset, they didn’t teach their kid programming. And let me tell you I’ve been to Silicon Valley and half of those programmers are on the spectrum, been there, seen them, been to the major companies. We got to start looking at what they can do. Also, a person with autism is a bottom-up thinker. So you get them out doing things, the more you fill up the database, then they get more flexible in their thinking. I’ve had parents say, “Well he got a job at an office supply store and he just blossomed.” Now we’ve got to deal with the work thing—chores for little kids, volunteer jobs at a church or farmers market when they’re like 12. These are some of the things we need to be doing. Learn how to do a task on a schedule outside the family. Stuff that they have to learn. The other big thing I’m seeing is all these grandfathers come up to me. And grandfather was an engineer or an accountant or maybe he worked fixing electrical wires, and he finds out he’s autistic when the grandchildren are diagnosed. But he had learned how to work. In my generation, social skills were taught in a much more systematic way. That helped them. You were taught to say please and thank you, you were taught not to say certain subjects at the table, you were taught not to tell the same story six times. These things were just taught. Let’s get another question.
Matthew Lerner: Sure. Somebody asked: What is your thought about helping kids connect socially on video games for kids who have trouble making connections in school?
Temple Grandin: Well, there is a place for some of those multiplayer games where they can talk to their friends, because that is an avenue for socialization. So, I wouldn’t ban it, but six hours a day on it is not acceptable. An hour a day, we’ll just use the rules we used in the 50s for watching TV. One hour a day during the week, two hours a day on Saturday and Sunday, they can play that game. And that is a social avenue, but I’m seeing things where all the kid does is play video games all day, and that’s not acceptable. And the research is very clear these kids are more likely to have problematic video gaming, and on the international diagnostic system, video gaming can become a disorder. You’re playing video games for six hours a day, you’re not doing anything else. And, the other thing, give the kid some choices of other alternative activities. You could do this sport or that sport, or you could do karate or some other thing, or you could take an art class or take a programming class. Give them some choices. But just sitting in the bedroom all the time, no. You’re going to have to come to meals, we need to have sit-down meals, learn turn-taking in conversation, that was taught to me. These were things that were taught. Now, shoving the kid into a bunch of sensory overload, that’s not going to work. I wouldn’t pick out the busy, crazy Walmart at Christmas, that’s going to be sensory overload, that won’t work. And then if you have a child that’s got a bad sound sensitivity problem, let’s say it’s to the hair dryer, let the kid control that hair dryer, where they are turning it on and off and they control it, they might actually get to like the hair dryer, when they shut it on and off and control it. That’s another important thing. But I want to see these kids getting out and doing things, as I’m very concerned about loss of skills, some of the stuff we don’t know how to build anymore. And people stick their nose up at skilled trades, let me tell you, high end skilled trades, and I’m not talking about roofing or floor tiles, high-end stuff, you will have a job. Everybody else in Disneyland is getting laid off right now, the airlines are tanking in the- financially. High-end skilled trades, you’ll have a job for life, no matter how much COVID we have or how big a recession we have. And that’s why I’m pushing that right now, because it is a totally economic slowdown-proof job, somebody still has got to fix the electric stuff and make it work and build things. Now, house framing I probably wouldn’t get into that. That’s too cyclical, super hard work. Oil patch, too cyclical, wouldn’t go there. I know where the jobs are and where they are going to say. I just got off a seminar that I had to tune out of from Cargill, and the ethanol industry is really messed up. This was a big mess. A lot of corn was going into ethanol and cattle feeders were feeding it and that industry got totally disrupted, I wouldn’t want to have been working in those plants, they’re coming back on now. It’s not as bad as hospitality and recreation and sports—that’s way worse, way, way, worse.
Matthew Lerner: Alright, one last question, and then we’ll move on. So, Dr. Grandin, you have a unique perspective on the way the autistic community has evolved over time, having been a prominent member of the community now for decades. So, I am curious if you have thoughts about the rise of screens everywhere; how if there’s any ways in which that has uniquely- you’ve seen changes in the autistic community that are unique or that are different than the changes that we see more broadly in the world now that screens are everywhere.
Temple Grandin: Well, I think that the biggest problem more than screens is- I’ve seen moms that just can’t let go, and I’ve suggested that their 16 year old student with good grades should go shopping. She started bursting into tears and says I can’t let go. You know, this problem of not learning enough skills. And the other thing I’m finding, is with normal young people today, they don’t even know how to look stuff up online. That’s something I do in my class now, I make them look up journal articles on different databases and summarize them, so they learn, you know, some online skills that are actually worth learning. But I think we’ve got to put hands-on classes back in the schools. Some of these: cooking, sewing, woodworking, art, welding, car mechanics, that is something we need to be doing. I’ve never passed an algebra course to this day. That’s screening out an awful lot of kids. I know how to do my old-fashioned 50s math, up to sixth grade, that I know how to do. But I’m seeing too many kids where, what you have to do is you’ve got to stretch these kids. Mother knew just how hard to push me, you don’t show them into big sensory overload, but you give them some choices of different things. You’ve got to stretch. Now, right now, I’m working on the phone with some people in Florida, and there’s a young lady that wanted to call me and she was afraid to call me. And I told her mentor about how I was afraid to make a sales call, cold call, when I first started. My boss made me do it, and I found out I was able to do it. And so I wrote back and I said I told that story where my boss made me do it, she needs to do it, not with you, she needs to do it. And she did! Then I just got an email last night that she’s doing all these things, she changed all the lightbulbs that you had to get up a ladder to change in their house. You know, she’d never done stuff like that before. Well, that’s an example of stretching, and there was no trauma there. It’s just stretching and we’ve got to start getting a mindset of what they can do, and we don’t have enough of that mindset. Because let me tell you, I know a guy—20 patents, owns an international metal fabrication company, owns it! He sells stuff all around the world. He’s as autistic as he could be and he stutters too. How about– Okay, let me tell you about two private jets and how they got them. High end skilled trades. The real high end, I’m not talking about flooring and roofing and that kind of stuff, I’m talking about real high-end stuff. He has a big international shop, started really little, makes difficult-to-manufacture products. I have to disguise what he does, and the other guy, he builds specialized factories, he just got a jet. Yeah. And the problem is, and you know what his education was? High school welding class. And he sucked at algebra. He’s building big complicated factories, he’s got two jobs going on right now, I was just on one of the jobs. See, this is what makes me crazy, as I go back and forth between the different disciplines. Introducing tools; that needs to start early. They like Legos? Well let’s build things with tools too and then you combine stuff you build with the Legos, that’s just fine. Get them into robotics classes. Sewing! I’ll tell you a good job, just a seamstress to repair clothing. You’ll have a job forever. A lot of the essential jobs, okay what do you do with a kid that can’t do algebra? Okay, let’s say, put me in a time machine and you made me 20 years old right now. But, I had the knowledge I got now. I’ll tell you where I’ll go: Amazon warehouse is where I’m gonna go. And I’m going to learn every job on that floor to prove that I can do it. You know what my goal is? 15 years later I want to design the next one. I kind of did that with the meat industry, I saw a lot of people go into the meat industry, learn every job on the floor, gravitate to maintenance, 20 years later, they get to play with giant Legos with a crane. That is a lot more fun. It’s called concrete tilt up, it’s called prestressed panels, a lot more fun. And, that’s- you see, these are the back doors into things, but you can’t just go in there and tell them what to do, you’ve got to work your hiney off doing every job on that floor first, you’ve got to pay your dues. Yeah, I would do that, I would work every job on that floor in that warehouse. And if I was 20 years old now, and I had the knowledge that I had, that’s where I would go. Because the other advantage with big corporations, is just so many places you can in that. Yeah, the other big problem with a lot of the employment stuff, is they’re not differentiating where bagging groceries is a training job, and where bagging groceries is a suitable career for some clients, it is a suitable career. But, I am seeing way too much not done moving on past that, there’s too much sort of getting in the disability box, I’m trying to bust you out of that! That’s what I’m trying to do. Industry is a fun place. Now, I just left a conference on the ethanol plants were down and that was showing a graph of how the market tanked and they’re coming back online now. I wouldn’t want to be in the- working for Disneyland right now, they’re just laying off 20,000 people right now. That’s another reason why I’m pushing high-end skilled trades. Fixing electric wires. Welders that can read drawings and just make anything. Car mechanics, auto mechanics. Real high-end stuff. Jobs forever, no matter what happens. Plumbers, electricians. It’s a two-year community college degree for fixing the electrical wires that bring the power in. And let me tell you, they need a lot of fixing, especially in California, they just let them fall apart.
Matthew Lerner: That’s true.
Temple Grandin: I get, kind of excited about this, and you need the visual thinkers, they are really good at fixing this stuff. I want to see these kids get out and do things. And then there’s other’s where maybe bagging groceries is an appropriate career. And there’s others where, yeah, we’re going to have to teach them how to dress themselves. You see, for me, it’s not abstract. I see different individuals, different clients. But, I’m seeing too many kids going nowhere, and you know, we need their skills. Silicon Valley’s hiring right now, right now. High-end programmers for artificial intelligence. But how is your kid going to learn programming if you don’t expose them? I got into the cattle industry because I got exposed to it! I can’t emphasize enough how important that is.
Matthew Lerner: That’s incredibly helpful, Dr. Grandin, because there are actually several of the other questions actually were asking you about that. So, you’ve answered many of them. I’ve got one last one I’ve been asked to bring to you before we let you go. So, of course, one big shift in the modern era of screens is potentially the availability of tools and supports for minimally verbal autistic individuals.
Temple Grandin: Well there is a lot of good stuff. If you’re working minimally verbal, here’s three books you need to read. Tito Mukhopadhyay, “How Can I Talk If My Lips Don’t Move?” Types independently, they got a locked-in syndrome, they can’t control their motions. Another great book, “The Reason I Jump,” and an even better book is the sequel. The sequel that has a funny title like fall down five times get up nine times. I can never remember. The sequel is a better book. And he describes that he can’t control his movements. And then there’s
“Carly’s Voice,” and all three of these type independently, completely independently. You’re working with non-verbals, these books are must reads. And again, let’s see what they can do. Here’s a great individual story. A doctor named Jed Baker took a nonverbal person out of an institution, an adult, he taught him how to make coffee at the local gas station and he was appreciated for his really good coffee, he became the coffee man. That gave him meaning in life. That is an appropriate job for him: the coffee man at the local gas station. That is just an example of finding something in the neighborhood where they can do a task that other people would want and appreciate and then when he went to a nursing home, he was the coffee man for the nursing home.
Matthew Lerner: Well, Dr. Grandin, thank you so much for your time and for your insights. You’re of course welcome to stick around for our next speaker if you’d like
Temple Grandin: I can’t.
Matthew Lerner: I thought so, you’ve got your next thing.
Temple Grandin: I had to leave the ethanol plants, which I’m supposed to be watching for my continuing education. Now, to come here and I’ve got another zoom call at 11 my time, and they wanted me on there 15 minutes ahead of time and I’ve got to go. I’m glad I was able to get with you just briefly.
Matthew Lerner: Thank you for joining us, and we hope that we were more engaging than ethanol.
Temple Grandin: You’re definitely more engaging than ethanol. And another thing that I’ve learned is what you’ve got to do when you’re different is sell your work. I’m going to just show you my drawing. This is how I did an interview. Hopefully that is nice and clear and you can see it.
Matthew Lerner: Wow!
Temple Grandin: I pulled up my drawings, and I laid my drawings out on the desk and I would show them to people. I sold my work, not myself. That and I’m going to put a bunch of pictures in there with it too. Okay, I’m going to have to go now, but thank you very much and I was glad that I was able to be here briefly. You want to learn about the different kinds of minds, my book,
“The Autistic Brain,” describes the different kinds of minds. I have another book called,
“The Way I See It,” my most basic book on autism, the way I see it. Everything is available on Amazon in ebook or regular book, and it’s great to be here!
Pamela Hurst-Della Pietra: Thank you so much Temple for your insights, you’re so wonderful.
Temple Grandin: Okay, I’m glad I was able to be on here at least briefly.
Pamela Hurst-Della Pietra: Take care.
Matthew Lerner: We appreciate it.
Temple Grandin: Alright, yeah, bye. I’m going to leave the meeting now goodbye!
Pamela Hurst-Della Pietra: Bye bye.
Matthew Lerner: See you soon. Wonderful, so again we are so pleased to have Dr. Grandin join us today. Our next speaker today is Christopher Flint. Christopher founded and is the president of AACTION Autism, a humanitarian volunteer organization dedicated to supporting developing countries in their efforts to better identify, accept, and educate individuals on the autism spectrum. Most recently, Christopher is the founder and Chief Creative Officer of Infiniteach, a social enterprise which develops educational and accessibility apps for the autism community, so incredibly relevant obviously to so many of the things we have talked about already. I’m pleased to give you Christopher Flint.
Christopher Flint: Great, thank you so much Matt, and I am happy to be here, thanks for everybody joining and for all of the other panelists and for Temple and her always unique and wonderful insights into the autism community. What I would like to do today as we get started here is give you a little bit of view into some of the digital tools for the ASD community. Some of these tools are going to be things that are available today that are readily available to you to download and start using, and some of them are going to be more trends that I see kind of in the digital space with the autism community. At the end of the slides, I have links to everything so you will be able to get all of those as well. I’ve been working in the autism field for over 20 years now, and as I was preparing for this presentation, I started looking back at some of my things and one of my earliest clients, whose name was Jeffrey, one of his interests was German chocolate cake, and it was around the time of MySpace, and he actually got kicked off of MySpace because he shared over 300 recipes of German chocolate cakes. In the early days on the Internet, 300 recipes, just they couldn’t handle it. But actually, he met a good friend over MySpace in those days and is still a friend to this day of Jeffrey, and so I’ve always been interested in this intersection of autism and digital, digital opportunities. So, we’re going to go over just a few assumptions I have, we’ll talk a little about technology for executive functioning/data collection, a little bit about communication and social technology, and then finish it off with tech for an inclusive world. So, just from my thinking, to frame this talk, I’d like to think about technology and screens as supplemental intervention, right? I think as we heard Dr. Alper and Temple say that technology isn’t the full answer for these kids and having kids on technology all day long, for any kid, you know, especially a kid on the autism spectrum who struggles with social interactions, probably isn’t the best idea. So, when we are thinking about the things that I am sharing today, we are thinking about things that can enhance other types of activities. The other thing that we should really be careful about is that all technology interventions can have a path to generalization, right? We see that many individuals on the autism spectrum struggle with taking skills off of the screen. And so, if you’re doing something that involves a screen with a child with autism, we should be thinking how can we bring that into the real world, and I think Temple did a great day of emphasizing that and saying how do we get kids into more jobs, more real world types of things? And then, the other thing to think about is we should use technology for what it’s good at, right, for things that humans aren’t so great at. So things like data collection, right, or things like executive functioning things, you know things that it’s harder for humans to do that and technology can take some of the weight off of educators, parents, and use technology to help with some of those tasks. And then the final thing of course is there is such a broad range of autism spectrum disorders and in only a few minutes I can only share so much, so none of these are specific endorsements for products, but more just to give an overview of what’s out there as people are looking for different types of interventions. So, with that let’s get started here. One of the things I think technology is really useful for, and I’ve seen, especially now during distance learning and kids learning at home, is scheduling. It seems like there’s just this amorphous day where it’s hard to decipher one day from the next and even weekends seem to lose their meaning, right? And so, using technology for things like scheduling, I think can be really, really helpful. Here is an example of one of those tools, this is an app called Choiceworks. It’s relatively inexpensive, it’s seven dollars, but the nice thing about some of these scheduling tools are they allow you to create your own schedules, insert your own pictures, easily customize schedules. This one’s really nice because it allows you to put in time as well. And so, I’ve seen a lot of parents use this for homeschooling, when you have this kind of set schedule of when you know math class is and reading and when you’re going to check in with your teacher, so you can add times to this. You know, like we see with a lot of individuals on the spectrum, the more structure they have around the day, the better they tend to do. And so, apps like this can be really, really helpful for supporting individuals on the autism spectrum. So, thinking about, and there’s hundreds of them out there, this is just one that I chose to show. But, think about searching things like scheduling and calendars and having these things on devices can be really helpful to kind of organize and help with that of executive functioning of individuals on the spectrum. Data collection is another great tool we can use, especially during pandemic times, when kids are at home and parents are looking for trends in behavior and looking towards interventions, right? You know, at school, hopefully teachers were taking a lot of this data but now that parents are more responsible, I think finding apps that can take some of that burden to look for trends, right? When are kids having meltdowns? When are kids having hard times? Is it after screen time or before screen time? And so, here’s just an example, there’s a company called Birdhouse, they have a specific autism app. And you can log in different data points and then graph them in various different ways to look for trends. And you can look for things like behavioral trends, attention and focus types of trends, and again, technology does a great job of this. It would be hard for a person to remember all of these things accurately, but technology can be really, really helpful with data collection over time. Communication, I think there are definitely benefits when it comes to communication in autism, I am going to share a quick video with you, this one is called GoTalk, and it’s actually an app that was designed for the Apple watch, and so wearables are also becoming very popular and trending right now.
Spokeschild narrating: Hi! Can I show you a cool app from my Apple watch? It’s called GoTalk WOW and it helps children with autism communicate. It has ready-to-go messages: “Hello”, “I’m Thirsty” Or record your own: “My new drawing is almost ready.” Talk about a good movie: “Have you seen Captain Marvel?”or just make plans “Let’s go get a burger.” Want more volume?-
Christopher Flint: So you can see from that short clip that having a wearable device for kids that are minimally verbal, or get anxious in social situations, having a device that can help prompt or get these social interactions started, or these communications started, can be tremendously helpful. And again, you know, there is an expense to it. The app itself is $50, you’ll get an Apple watch now for about $300, so about $350, which is much cheaper than a standalone device used to be, but still it is an investment to kind of get things going. In terms of some of the trends where things are going, a lot of these things aren’t out now, but if we look at things like translations, right, so let’s take a look at this quick video.
Hotel employee: “Good evening sir how may I assist you?”
Person checking in: “Sprechen Sie Deutsch?”
Hotel employee: “Sorry, I apologize. Okay Google, German Interpreter.”
Device: “Ready when you are.”
Hotel employee: “How may I help you sir?”
Device: “Wie kann ich Ihnen helfen, Sir?”
Christopher Flint: So technology has come a long way in terms of real time translation and there’s an example of how it might work. We see this with individuals with autism, especially minimally verbal or nonverbal individuals with autism that have trouble. Parents might understand their unique gestures and words, but to a novel person, it might not make much sense. And there’s actually people out there now using machine learning to help with these issues. And so what they will do is they will get these devices and they’ll put them in kids’ shirts, they’ll record kids, and then parents can actually code what these different things mean, right? What this app does in real-time is that it helps translate these vocalizations and gestures that nobody else might not know into real world types of things. So, this child is saying that he wants a drink, but nobody else might know what that means, but through this app it can actually translate his movements or his vocalizations into a language that other people could understand. So again, something that would be really, really difficult to do without technology that technology is allowing us to do. Augmented reality is another place where technology can be really helpful for individuals on the spectrum. There’s a really cool company called Brain Power that’s doing some of this work. This is readily available, it’s commercially available. You can take a little- we’ll watch this for a few seconds so can see some of the potential with it.
Person in blazer: “Connect, eye to eye, eye contact, that kind of thing.”
Person with teal tie: “Yeah, so with eye contact, which seems like such a simple social grace but it’s so important to tell the other person that you care and that you’re paying attention. Well when I look at you, suddenly your face becomes this cool cartoon, catches my attention.”
Blazer: “And here we have it on the video kind of showing what you’re explaining, right?”
Teal tie: “Exactly, so as mom becomes this funny dog and as he looks, he is getting points for making the eye contact and if he’s feeling stress, we measure that stress so we can dial back the game. This is not supposed to be hard.”
Christopher Flint: So you can see in that video, the student here, the child with autism, is wearing Google Glasses and it’s actually putting things over the person to help them focus, will help them with eye contact, know what they’re supposed to pay attention to. There’s also some cool stuff with the new technology from Microsoft called the HoloLens that’s doing the same type of thing that’s helping individuals with autism recognize emotions, just by looking at faces. There’s these little pop ups that come onto your screen, almost a heads-up display that can give you more information that a person with autism might have trouble understanding. And then virtual reality is the other thing that’s helping out. So here is a quick example of how that might work. This is from a company called Floreo.
Spokesperson, with jungle noises in background: Here is an example of Floreo VR. When the devices are paired, the monitor can see the learner’s view between these two green lines, as well as some of the area outside of the view of the learner. Banner language is delivered here to provide guidance to the monitor. In this lesson, the monitor has some simple controls used to direct the lesson. This Learning Card is called “Emma Is Pointing”. In this lesson, the monitor is able to choose an animal. When the learner looks at the safari guide, Emma, Emma will point to that animal. The banner shows a speak icon when displaying suggested language that the monitor may say to the learner.
Christopher Flint: So you can see from that example, the student is wearing a virtual reality headset and it’s working on joint attention. So, following a point, following a gaze of a different learner, all within a virtual reality environment. And so these are things that are out today that people are using that are doing research. And then finally to wrap things up, I think another place that technology has an important role is in creating an inclusive world, and that’s where my work comes in with my company InfiniTeach. So, we’re developing technology to help individuals on the autism spectrum go to places they love with the people they love, and so we have apps for places like aquariums and museums, where it might be overwhelming or hard for individuals with autism and their families to go to. We present them with things like social guides and sensory guides to help them better navigate these places and become part of the world and go to places like dental offices and have training for the staff there so that they’re better able to welcome and provide access to those places as well. As I said, there are some slides here that we can definitely share that have links to all of these things. But again, I appreciate the opportunity to share all of these with you and there is a lot more to get into but I will stop there.
Matthew Lerner: Christopher, that was fantastic and again, this is another moment where it’s so great that all of this is being recorded, because there is so much good information that you are sharing at the moment, so many good tools. So, one of the questions that, sort of emerging from the audience is, many folks with ASD, of course, who have strong interest in screen media might have, again, specific activities that they are particularly interested in using. Of course, the idea here with all of these tools you’re talking about is to sort of leverage that interest towards something that can really be a valuable or helpful learning tool. So, I guess, do you have advice or guidance for families for introducing, how best to introduce somebody who’s, say, really interested in a specific video game for instance to one of these more novel technologies that you and others have developed?
Christopher Flint: Yeah, that’s a really good question, I think for some individuals, just being technology is enough, and they are interested in just exploring new technology, but for other kids I think having a very thoughtful approach to understanding the context of what’s going on, right? I think just putting something in front of a kid for the first time and saying here explore, may be not the best option for all kids on the spectrum, but helping them understand the purpose, the why, I think is one of the most important reasons that we can help individuals know. And so, pairing these types of technologies or devices with the actual purpose that is going on and so with our technology for example, we have encouraged parents and gone with kids that have actually been at the museum, like driving to the museum, and we’ll help them get ready by using our social guides in the app, right? And so, pairing it with a real world example of how it would work or pay off I think could be one way that we could help introduce these things so kids can make the connection and get the meaning behind the why of using it.
Matthew Lerner: Great, and then last question for you, then we are going to have our Q&A with all of us in a little bit, after Dr. Dunckley. Is there any software that you are aware of to help non-autistics become more inclusive?
Christopher Flint: Yeah, that’s a really great question, and so I think the best way that we have to help with that sort of opportunity is through training, right, is to be able to provide best practice information, to have the voices of the autism community heard and understood and so listening to people like Dr. Grandin speak, conferences like this, training that we provide through InfiniTeach and other companies to really understand what autism is and how to provide interactions. I think that there’s almost this scary sense for a lot of people of interacting with a person with autism for the first time and not knowing what to do or the right thing to do is. Information and communication is obviously the best tool we have to defeat any bias, and so I think that the best thing we can do is to provide resources to training information to help with those types of situations.
Matthew Lerner: Perfect. Christopher, thank you so much. We’re going to move now on to our last presenter, Dr. Victoria Dunckley and then we’re going to have an open Q&A with those of us who are still here, as well as an additional member of our panel, Dena Gassner, who I will introduce in a moment as well. So first, Dr. Dunckley is an award winning integrative child and adolescent psychiatrist, based at the Center for Life in Los Angeles. She is a nationally recognized expert on the impact of screen time and brain health and development, and is the leading voice regarding screen time’s influence on psychiatric disorders, addiction, and the overuse of medication in children. The floor is yours, Dr. Dunckley.
Victoria Dunckley: Ok, thank you. I am here to talk about the negative aspects of screen time and how screen time impacts the neurophysiology of the brain. And I know it’s kind of confusing for parents to hear what the technology can do and then the negative effects. So really as a clinician, all I care about is what makes a person better and what makes them worse. So, you can do things in a certain order. So first, you want to stabilize the child, then you want to optimize their brain development, and then and only then use- utilize technology, as needed, for things you couldn’t get any other way. So that’s kind of how I approach it. Okay, so there are certain aspects about ASD in general: one is that, as everyone has mentioned, ASD kids are intensely drawn to technology. They have a very high risk of addiction and heavy use in general. Parents are more likely to use technology or devices to control behavior with autistic kids compared to their siblings. And parents are also less likely to set limits with technology with ASD kids. There is also pressure to use technology because it’s “normal” and that it may be a relative strength for a child to use the computer so a lot of people, a lot of adults end up encouraging the child. As you can see, this is kind of a set-up or recipe for tech overuse. But, the problem is we are not just dealing with tech addiction; there’s also side effects to technology in general. So, screen time is actually psychoactive, it has very potent effects on the brain, and it acts like a stimulant. So, much of the effects we see mimic stimulant drugs, including things like caffeine, or even cocaine, but also just even medication. So, when I first started looking at this, I noticed that when kids used, especially in the ASD population, that they would have a lot of the same symptoms as kids who were taking ritalin. They would have tics, they would be more twitchy, they would be acting out more, they would be crying when they got off the screen. So, it mimics kind of that same cycle of being very overfocused and then withdrawing and being very weepy and irritable. I also, I’ve been working on this topic for 20 years, and back when I first started looking at it was just video games, obviously everything is a lot worse now, but literally, all I do all day long now is work on reversing all of these effects that are happening. So, a bigger issue is that a lot of these side effects actually exacerbate aspects of autism that the autism brain already has, that’s inherent in autism. So I’m just going to go over a couple of those examples. There’s many of them, but one is that it causes hyperarousal and children with autism are already in a state of hyperarousal and they have trouble regulating their arousal. Another is that it suppresses melatonin, the sleep hormone, and melatonin isn’t just for sleep, it is also an anti-inflammatory and children with autism have inflammation in the brain to begin with. It also, we know over time screen time reduces connectivity in the brain, in the white matter and that’s another inherent aspect of autism is that their brain is not as connected. We also know it fractures attention; children with autism have a fragile attention system to begin with. And then we know, even with typical children, it delays speech and language and obviously that is an issue with this population as well. And what I see also is that screen time diminishes eye contact. So, a lot of times when I take kids off of screens, we immediately see, within a week, we see an improvement in eye contact and we see this in the typical population, but it’s obviously even more relevant in this population because eye contact impacts brain development. So, you are actually rewiring the brain when there is eye contact, face-to-face conversation, all of those things. And they can mimic more- the more they are off the screen the more they are able to make eye contact, mimic facial expressions, also they are viewing the whole body and that has to do with reading body language and things like that, so there’s a lot of issues. Okay, so let me just go over a couple of slides here. Okay so really this slide is just to show you that tech addiction does actually damage the brain. This is a whole list of findings they’ve seen in brain imaging. There is atrophy in the grey matter in the frontal cortex, and the frontal cortex is really the area that we’re trying to focus on with all children because that is where you have mood regulation, executive functioning, creativity, empathy, all of the things that make us human. And you can see here in this actual slide that is up here, white matter fragmentation, and that is the same thing I was talking about with connectivity. The point of this is that it might seem strange that they would actually have brain damage when they are not ingesting something, but the eyes are actually part of the Central Nervous System, so it makes sense that when you are taking something in through the eyes you are impacting brain and it can be quite potent. So another aspect that is really important to understand is that screens hijack the social reward pathways. This is for any kind of addiction, but especially for tech addiction, and those pathways are there for an evolutionary reason, they are there to keep the baby close to the mother. So, those are the pathways that get hijacked and of course those are the same pathways that we really want to work on and stimulate in a healthy way with a person-to-person rather than screen-to-person. We also know that a healthy attachment between the parent and child is protective against tech addiction. So, you are literally rewiring those networks and protecting them the more time you spend with them and that they are off the screen. And then the other aspects that are important is that, in previous generations teenagers naturally went through this awkward stage through adolescents and obviously this awkwardness is even worse for kids on the spectrum but now they are not getting the same practice. So, it used to just be through practice we would become less awkward and become better with our social skills and they are losing those opportunities now. So what I do with every child, teen, and young adult is that I see, as long as they are willing, is that we start with a four week electronic fast. What this does is it kind of reverses all of the physiological changes that screen time causes, so it resets the body clock, it reduces hyperarousal, which in turn brings blood flow to the frontal lobe, the reward pathways get very intensely stimulated with screen time and then they become overstimulated and desensitized so it is hard for the child to engage in non-screen activities. So, it kind of resets those symptoms and resensitizes them and it lowers the stress response. And then of course with all of those things, they sleep more deeply, which is reparative in itself, they start playing more, physically getting more hands on, things like that. We see a reversal physiologically and then functionally, kids, you can see, as I mentioned, are talking more, they are happier, they are more able to follow rules, they are not being bombarded all the time, so you see them blossom, and I think Dr. Grandin mentioned that same term, and that is exactly what I do with children and young adults, is that I try to get them very hands-on, I try to get them doing something physical. We know that what works for brain development, and those things are: bonding, rough-and-tumble play, face-to-face conversation, eye contact, art, creativity, and those are all things that are reduced, and time spent outdoors—nature, green spaces— those are all things that are reduced when technology is in place. And just a quick case study here, this is just someone who started doing the four week fast and then continued with it. This is a six-year old boy with autism, heavily addicted to technology. He was addicted to Minecraft. They got rid of all devices, even their own computers. But he was so addicted he was having the family act out scenes from Minecraft. So she said he went from literally kicking and screaming and not wanting to leave the house to playing at the park, going to the library, playing with his siblings. She said he wouldn’t sit on her lap to read a book, now he was not only sitting on her lap, but he would look at books himself. In the classroom, all of the teachers made comments about, you know, “what did you do?’, “what is going on?” His handwriting changed, that is a sign that the frontal lobe is becoming more integrated, and I see that often. This may sound dramatic, but this is like a very typical response. So this is my method and I look at things functionally and then once the child has been reset, we discuss with the parents all of the risks and benefits of reintroducing. If they want to reintroduce, we do it very slowly and methodically. And we always pull back, but this process can take years to kind of find the sweet spot, and some kids need years to just be off technology altogether, before they can even tolerate any. So, that is my perspective and sorry if I went over.
Matthew Lerner: No that is perfect Dr. Dunckley, thank you so much. Quick announcement, which is that due to the great interest here and also we want to make time for everybody, the end of the session is now being pushed to 1:45, so we have a little bit more time for open Q&A. Those of you in the audience will have opportunities as well, if you put them into the Q&A to be called on, you can speak for yourself directly to our panel. One question for Dr. Dunkley, though, before we move onto that, which is Carol Ann. So Carol Ann, feel free to unmute yourself and ask your question.
Carol Ann: Hi, good afternoon. I am from Massachusetts and the question I had was, what are some strategies that we can use with our ASD children to get off allotted screen time without intense outbursts?
Victoria Dunckley: Well, the outbursts that you see are because the nervous system is dysregulated, and they cannot regulate their arousal levels. So, you have this very intense stimulation, and then when they come off, it’s a withdrawal. So that is why I always advocate for just going cold turkey for a few weeks, because even if you cut back, the nervous system, once it gets into that state of dysregulation, tends to stay that way. So, cutting back is of course better than nothing, but you won’t see, qualitatively and quantitatively, it’s a totally different response when you actually take them off altogether, and then they kind of grieve not using the screen for fun and everything, and then you see them come alive. So I always just tell people just quit for four weeks, look at it as an experiment and see what happens, and then after the four weeks then you can decide if you want to go back or not, in small amounts. The whole meltdown thing associated with screens has been– taken over my life for the last, like I mentioned I started this 20 years ago, but really the last 10 years, I really want to raise awareness as to that issue.
Carol Ann: Thank you.
Matthew Lerner: Wonderful. Ok, so we are now going to turn to, and thank you Carol Ann, thank you Dr. Dunckley, but I am going to turn to our discussion. And I am thrilled to let you know that another spectacular expert has joined us as well for our discussion, so you can now see her on your screen. I’m pleased to introduce Dena Gassner. Dena is a renowned scholar, self-advocate, parent, advocate, and speaker in the autistic community. She is a PhD candidate in Social Work at Adelphi University and Adjunct Faculty at Towson University. She serves on numerous boards in consultant roles, including the Arc of the United States, and has presented all over the world on the topic of autism, including at the United Nations. She has a growing number of publications in a wide range of academic and popular outlets, including the widely read book,
\f2\i Spectrum Women
\f0\i0 . She is also just a wonderful human being, a true mensch, and a great person to join our conversation today. So, let’s see, we have some questions to be thrown to the panel. So, I believe the first one is from Rafia. Ok, it looks like we need a minute for Rafia to get set, so I will kick us off. So, we’ve heard–
Rafia: Hi, I’m here.
Matthew Lerner: Oh perfect, Rafia, the floor is yours.
Rafia: My question here was, how, for nonverbal children, how do we provide them with the right amount of technology or therapy, per se, to get them to enunciate or speak or even say words. Let’s say they already use their communication device, but they are still not trying to even repeat those, they are just kind of touching it and telling us what they want.
Victoria Dunckley: Can anyone answer, or did you–
Matthew Lerner: Dena, would you like to start, to kick us off?
Dena Gassner: Well I just think that for me personally the focus is to have a valuable, usable form of communication, and verbal language is only really valuable to the people who want to hear his voice; not as valuable to the autistic person, I don’t think. I had the pleasure of having a wonderful, bilingual, twice exceptional, 14 year old, who was nonspeaking, come and lecture for my class, two- three weeks ago, and what we found is his responses were extremely complex. I would have thought, coming from a speaking model, that if someone asked me a question and I had to use technology to communicate, I would probably do yes and no as often as possible. But, we actually had to wait for him to respond because he was so coherent and so fluid and so complex in his communication. Words like, “It’s been a very large delight to be a part of your class tonight.” We just waited for him to say what he had to say, because he is so smart and he has so much to say. I think also, I was very careful to not ask any questions that he could say yes and no to. My husband suffers from that problem. Our son is verbal, he monologues a lot, but my husband has a tendency to say, “How was \’91fill in the blank’?”, “How was your training session?”, “How was class?” And that is always going to get a “fine” response, or “it was good” or “it was okay”. But if you say, “Tell me what you did today”, you see that more complex language. I am not a language person, I am just speaking from a mom point of view and an autistic point of view. I would say the same thing about eye contact, that is not for us. We do not need to make eye contact to communicate. And, if we get to know you, and we feel comfortable in your space, we probably will. It probably will be rhythmically different, we may look away more often, but I can tell you that Zoom is killing me, and I am a very verbal person. But, everybody on my screen is moving in some way, and so trying to focus during Zoom education, I think would be very difficult for somebody with an immature or maybe an ADHD-oriented type of attentional issue.
Rafia: Yup, yup.
Dena Gassner: So, I think there are just tricks we have to learn in terms of trying to facilitate. And I think embracing one goal, which every student can aspire to, every adult can aspire to, which is: becoming your own personal best. That’s not in reflection or in comparison to anyone else. It is all about your own personal growth and development. And so I think if we focus on that instead of focusing on fitting in or trying to please other people or things like that– I think as a parent, my job was to create space for him to communicate whatever way he chose to communicate. It wasn’t to force him to communicate in a way that other people are more comfortable with. Does that make sense?
Rafia: Yeah, it is more like the family members, obviously were raising her—it’s my daughter—but we are raising her and everyday we know her gestures, we understand her, family members understand her. But, when we go outside into the real world, not everybody will pick up or understand her, so she has to use her communication device. We got it about a little over a year ago now. So, she is not using all of the words, but that is my concern, is trying to explain to somebody who wouldn’t understand her gestures just like that to what it is she is really wanting or asking for. It doesn’t have to be technology based or it could just be some need or something that she wants.
Dena Gassner: Well, things get better. We have a friend, Chloe Rothschild, who is very verbal, but when she presented at the United Nations, she talked about how under stress, she still prefers to go back to her technology. So, I think weighing the benefits, right? Is the purpose to instruct her? I feel this way about handwriting by the way. Is the purpose to learn handwriting or is the purpose to communicate? And if the goal is to communicate, then we need to make it expeditious and less labor-intensive. But if the goal is to actually teach how to speak or how to communicate verbally or how to use handwriting, then that has to be its separate instruction. I am not a big fan of multitasking, I think it is too complicated. Thanks for your question though, thanks very much.
Rafia: Thank you!
Matthew Lerner: Christopher, or Dr. Dunckley, do either of you want to jump on that? Ok. Alright, Rafia. Oh, sorry! Okay you’re muted. So, this is the challenge of trying to synchronize communication over Zoom! Rafia, thank you so much for your question. Alright, our next question is from Jenny.
Jenny: Hi, I really appreciated, Dr. Dunckley, what you said about screens and how they affect us and how they affect our children. I am a high school counselor and I am a mom of 7 year old twins. I was really impressed with the information. I would a) like to know where can I get more information about what you are offering and sharing, and b) how does that relate to Zoom school, where children are- the rule is 2 to 4, I have high school kids who are on 6 hours a day on a screen, so could you speak to that?
Victoria Dunckley: Sure. Ok, so the best resource is the book “Reset Your Child’s Brain,” that goes into a lot more detail about the physiology and case studies, as well as how to actually do it and all of the practical stuff that comes with it. There is also just kind of a nuts and bolts version on my website that is free, drdunckley.com/videogames. And then, I wrote an article in Psychology Today called “Autism and Screen Time: Special Brains, Special Risks,” that kind of goes over all of the vulnerability aspects I was talking about-
Jenny: Great, thank you.
Victoria Dunckley: -as well as some of the research. Ok, so as far as school, it is the bane of my existence. <laughs> It really is hard, I mean so many families are really in stress and they feel like they are torturing their kid and it is awful. So what I have been doing in my practice is we have the parents ask for as many paper or hands-on assignments as possible. Some kids we say they can’t be on the screen at all, I mean many of the kids I should say. Sometimes the school says okay, we understand, we get it. Sometimes the school resists. I have been writing medical waivers, so you could ask your pediatrician for a medical waiver. Every school is different, even within the same district. The more that you talk to them and explain why it is so intolerable and it is a safety issue, or they can’t sleep, or if you use some kind of physiological reason, and especially if you get a health practitioner involved to support you that helps. But, it’s really hard. And also I think, um- also, some of the teachers will say just log on, and the kid does not have to be in front of the screen but as long as you log on they can count the kid present at least. And then, the teacher- I mean the parent can kind of be the eyes. But yeah, it is a problem.
Jenny: Thank you.
Matthew Lerner: Other thoughts on that as well, Christopher or Dena? Dena you are muted.
Dena Gassner: I just put in the chat box a book resource that I have found very interesting. It is not brand new, and it isn’t autism specific, but it is called “In the Shadow of the Net” and it talks about internet addiction and I think it is a really good resource. The other thing I wanted to discuss are these funny blue glasses that I wear. I, and my son, have been in Irlen filters, I put that in the box too at Irlen.com. Irlen filters filter out light and color that cause visual distortion. My son and I present very differently in our autism. He is probably more stereotypically what you might consider when you look at an adult with autism, a male. I am an extrovert on steroids, whereas he is more on the shy end of the spectrum, but neither of us are in the middle of the Bell curve, if you will. But, we both have this visual processing issue. His was so significant that as soon as we introduced technology, he developed seizures. He had a grand-mal in the middle of our living room. So, what these colors do is that they filter out, for him and I both– for him, it filters out a lot of color, his colors are almost black, they are so dark. He is very photophobic. Mine filter out yellow and orange and red colors. We were successful in getting the lenses paid for by the public schools as assistive technology. It was a battle. We kind of tweaked the truth a little bit. We put him in the lenses and asked the schools to reimburse for them. Well, we did not tell them we paid for them, because they don’t ever reimburse. But, we made an arrangement with a provider that she would reimburse us if the school paid. And, what we saw is that his need for pull-out instruction for sensory diet, for a tremendous amount of staff time diminished so dramatically, that the school was happy to pay for them. And so, it took us a little effort. The low tech version of this is the colored overlays that you may have seen in schools, but that does not protect you on the screen, it does not protect you in the environment overall. They are very fragile, they are difficult to use. The glasses are actually more accessible, I think. My son never had a seizure after we put him in the lenses. I was testing behind him, if you will, because he was in my lap as I was testing. So it was a shock to me to find out that the reason I was not successful in my Masters Program at reading journal articles—yeah we still had card catalogues back then but they were paper journals and they were very glossy—and I could not keep my train of thought because I could not focus visually on the page because of the glare. So, I just encourage people to look into Irlen lenses. If you look at Google Images, you see Dan Amen’s fMRIs of the brain before and after the lenses. They do help with dysregulation for me more than anything. But now that we are on the computer it is a God-send. The last thing that I want to bring up is ergonomics. I have another set of Irlen filters that are my trifocals, if you will, the progressives. For the first 2 years of graduate school, I found myself sitting at the computer like this, trying to read through the bottom of my lenses. You can imagine what that does to all of this, your shoulders, your neck, your back. So, I got a single pair of lenses that are only the bottom part of the progressives, only the, I’m sorry, the middle, the computer distance. What it does is it allows me to have better posture, better ergonomics. Make sure if the kids are using a laptop or they’re using an iPad that they are at eye-level. If they are looking down at the computer, you are going to have similar issues with the motor and the physiology of accessing the technology. The best thing I saw is turning your computer onto your television, because it is massive. If you have kids that are having trouble regulating because they are not seeing grown up human beings, they are seeing little tiny people, it really really helps if the people are big people like on your computer, on your TV. So, if you could transition onto your television, that is even better. So, those are just some things that have come through my Facebook groups that I thought were brilliant ideas and things that I use, and I hope that is helpful to someone else out there.
Jenny: Thank you.
Matthew Lerner: Thank you so much Dena. One thing I would add as well, and this is perhaps more conventional, but I think important to mention to Jenny’s point, which is of course salient to all of us living in our “Zoomified” world these days is, and this relates to something I mentioned earlier, as well as Dr. Alper when she was on, which is structured digital or video diets, and you can hopefully work with your school district on this, the idea of continually being on the screen all day long. It’s hard enough for any of us, certainly for me. When I spend my days like this, it’s exhausting, it’s exhausting to your eyes, it’s exhausting to your brain, it’s exhausting to your executive function system. So, creating breaks, clear structured windows of time for not looking at the screen at all. But also, thinking about some of this reward piece, right, so if somebody has an activity that is rewarding, allowing that to be part of that interspersed system so that it doesn’t just become class on the screen with all of the different conflicting challenges that Dr. Dunckley was talking about, and then occasionally something else that’s hard to want to do as well, so that you can make sure you are creating clear delineations, clear breaks and clear motivation sort of in each section. And hopefully your district can work with you on that. Christopher.
Christopher Flint: I just wanted to add one thing, too. The one thing to be careful about is, I think one of the biggest threats to the autism community is social isolation, right? One thing every child had before was going to school, and we knew a lot of kids with autism that was their only social opportunity was going to school, and didn’t do a lot much else out there. I think we really have to weigh cost and benefits of if technology is the only way to maintain these social connections with classmates and peers and family members, how does that fit into some of the risks that come along with technology use. I think, just like the general population, we have seen a lot of individuals with autism go through periods of depression just from the lack of connection, and we are all feeling that to some degree as well. I think, Matt, what you were talking about too, if we are going to prioritize technology use, we have to make sure that we include those important connections, so that these kids don’t become isolated.
Victoria Dunckley: I was just going to say, for a lot of these kids to have special ed and then they have OT, speech, and ABA or some kind of behavioral intervention all through Zoom; if not everyday, then throughout the week, I just want to say it is okay not to do those things if you do not feel if it is helpful. So I think parents feel pressured because it is a service that is being offered and that they have to use it. And that, what if he gets behind on his speech? But then they are telling me that it is not working, or that the kid is just crying during the session. So, it is okay to stop those especially during the pandemic, to stop those services if they are only through Zoom.
Matthew Lerner: Excellent key advice there that I think many people won’t necessarily think of. A few other key things to mention. First of all, really important, in case this isn’t self-evident, being in touch with other parents in your own district, so that you’re aware what others are doing, how they are responding. Every district is its own little fiefdom in some ways, and so being able to work together and know what’s available and know what other people are being offered. There might be something that surprises you that your district is using that might be useful for your child. In New York, they’re called SEPTAs, Special Education Parent Teacher Associations, other states call them other things. But, using those kinds of resources as families together is important. Also, it’s important to make sure that your child’s teacher knows what screen your child is using at home, so there is this coordination if that is a challenge. If your child is potentially doing school on a phone all day, that’s really important for a teacher to be aware of and respond to, because that is going to impact their learning, especially in comparison to what Dena was talking about before. And, of course, trial and error. This is a theme that cuts across a lot of what we are doing.. Right now, everything feels like it’s trial and error, so it is our job to allow ourselves to institute that flexibility and to remain flexible as the world continues to change. Thank you, Jenny. And with that, we are almost out of time, and so I’d like to throw it back to Dr. Hurst-Della Pietra, who is going to put a bow on this whole wonderful event for us.
Pamela Hurst-Della Pietra: Well, thank you so much Matthew, Temple, Meryl, Christopher, Victoria, and Dena for sharing your experience and expertise with us today. And thank you, you the audience, for joining us today and for engaging in this really important conversation. We hope that today’s discussion has been enlightening and has equipped you with a few new tools for healthy digital media use in your families. To continue learning about this topic, please be sure to visit our website. We will post additional insight in the coming days. We will also be posting a YouTube video of today’s workshop which we encourage you to share with your fellow parents, teachers, clinicians, researchers, and friends. For more from Children and Screens, please follow us on social media at the accounts shown on your screen. Our discussions about digital media use and children’s well-being will continue throughout the rest of the year. On Wednesday, November 4th at noon, we will discuss digital media, social comparison, and body image. Then, on Wednesday, November 18th at noon, experts will show you how you and your children can harness creativity online. Stay tuned for more information on both of these upcoming events. When you leave the workshop, you will see a link to a short survey. Please, click on the link and let us know what you thought of today’s webinar. Thanks again, and everyone stay safe and well. Bye-bye.