In episode 155 of Imagine Otherwise, host Cathy Hannabach interviews disability media studies scholar Meryl Alper.
Meryl is the author of 3 books about how kids with disabilities use digital technologies, including her most recent book, Kids Across the Spectrums: Growing Up Autistic in the Digital Age.
Kids Across the Spectrums is out now from MIT Press and it is the first book-length ethnography of the digital lives of diverse young people on the autism spectrum.
In their conversation, Cathy and Meryl chat about how autistic and neurodivergent youth and their families resist popular assumptions about their media use while also using digital technologies like TikTok, Scratch, and YouTube to build community, explore identity, and learn new skills.
Meryl also shares some behind-the-scenes context about how she navigated ethnographic research during the pandemic and found the spark for this current book in some of her earlier research.
They delve into why moral panics over how autistic kids use media often index broader cultural anxieties over how technology is altering society and what it means for the actual youth caught in the middle of these debates.
Cathy and Meryl close out the episode with how Meryl imagines otherwise to help build a more just future that centers the worldviews, needs, and desires of neurodivergent and disabled youth.
In this episode
- Debunking neurotypical peoples’ assumptions about autism and technology
- How autistic kids use digital technologies to build community
- Doing ethnographic research during a global pandemic
- Recent forms of autistic youth cultural production
Meryl Alper is an associate professor in the Department of Communication Studies at Northeastern University and a faculty scholar at Northeastern’s Institute for Health Equity and Social Justice Research.
Her research focuses on the social and cultural implications of communication technologies, with a particular interest in the role of media and technology in the everyday lives and well-being of children, families, and individuals with disabilities.
Meryl’s newest book, Kids Across the Spectrums: Growing Up Autistic in the Digital Age (MIT Press, 2023), is the first book-length ethnography of the digital lives of diverse young people on the autism spectrum.
In her research and teaching, Meryl also draws on two decades of experience in the children’s media industry as an educational consultant, researcher, and strategist for companies such as Sesame Workshop, Disney, Nickelodeon, and PBS KIDS.
Teaching and learning resources
- Meryl’s book Kids Across the Spectrums: Growing Up Autistic in the Digital Age
- Meryl’s book Giving Voice: Mobile Communication, Disability, and Inequality
- Meryl’s book Digital Youth with Disabilities
- “How a Community of TikTokers Is Debunking Disability, One Viral Video at a Time“
- Artist and activist Jen White-Johnson whose work challenges the erasure of Black neurodivergent children in digital and literary media (Jen also designed the beautiful cover of Kids Across the Spectrums)
- Myth of the “digital native“
- Judy Singer on the concept of neurodiversity
- Harvey Blume on the concept of neurodiversity
- Moral panics
- Grounded theory
- Feminist science and technology studies (STS)
- Social shaping of technology approach (SST)
[00:00:00] Cathy Hannabach: Welcome to Imagine Otherwise, the podcast about bridging art, activism, and academia to build more just futures.
[00:00:12] I’m your host, Cathy Hannabach, and today on the show I’m talking with disability media studies scholar Meryl Alper.
[00:00:19] Meryl is the author of three books about how kids with disabilities use digital technologies, and she’s here to talk with me about her most recent book, Kids Across the Spectrums: Growing Up Autistic in the Digital Age.
[00:00:32] Kids Across the Spectrums is out now from MIT Press, and it is the first book-length ethnography of the digital lives of diverse young people on the autism spectrum.
[00:00:43] In our conversation, Meryl and I chat about how autistic and neurodivergent youth and their families resist popular assumptions about their media use while also using digital technologies like TikTok, Scratch, and YouTube to build community, explore identity, and learn new skills.
[00:01:01] Meryl also shares some behind-the-scenes context about how she navigated ethnographic research during the pandemic and found the spark for this current book in some of her earlier research.
[00:01:13] We also delve into why moral panics over how autistic kids use media often index broader cultural anxieties over how technology is altering society and what this all means for the actual youth who are caught in the middle of a lot of these debates.
[00:01:29] We close out the episode with how Meryl imagines otherwise to help build a more just future centering the worldviews, needs, and desires of neurodivergent and disabled youth.
[00:01:41] Thank you so much for being with us today, Meryl.
[00:01:44] Meryl Alper: I’m very excited to be here.
[00:01:46] Cathy Hannabach: So, in your new book, Kids Across the Spectrums, you challenge a common assumption that youth in general and autistic youth in particular somehow have an inherent affinity for technology.
[00:01:58] And I think we still see this assumption in a lot of spaces. What are some of the harms of that narrative? And what did your interviewees in particular demonstrate in terms of how they actually use digital technologies in their daily lives?
[00:02:12] Meryl Alper: So, there are several assumptions about autistic youth and technology, ones that can be traced back far earlier than our common, contemporary technological era, but also to the mid-to-late 20th century in news and mass media.
[00:02:31] One of those narratives is the idea that, yes, that young people and autistic people in particular are naturally good at technology. They’re tech savvy. So much so that I think in the past 10 or so years there’s been this push towards, well, let’s try to employ them as coders. You know, let’s try to, you know, certainly there is absolutely challenges and problems and discrimination with disabled people in terms of employment.
[00:03:00] But there’s sort of this idea that, oh, autistic people, you know, have this natural talent for pattern recognition or you know, sort of repetitive tasks. So, there’s that sort of track that is a narrative that exists widely.
[00:03:17] There’s also a narrative that technology socially isolates autistic kids, so much so that they would rather seek the company of technology than people. And I think the stereotype that exists there is the idea of gamers in basements. And maybe some of that then leads to you know, thinking about gamers, thinking about sort of toxic cultures, that autistic cisgender boys are part of that toxic culture. So that’s a narrative that exists.
[00:03:49] And then there’s also one that isn’t necessarily about autistic kids, but it’s about autism in kids. It’s the narrative that giving kids too much technology too early can give neurotypical kids quote unquote autistic-like traits.
[00:04:05] So those are concerns about, oh, young people these days, they don’t make eye contact anymore because they’re too busy being on their phones so they don’t know how to have one-on-one conversations or, god forbid, conversations on the telephone because they can’t handle spontaneous social interaction anymore.
[00:04:25] All of those are harmful in different kinds of ways.
[00:04:29] The social isolation narrative is very technologically determinist, that technology socially isolates and why that’s negative. I think that it can detract from the value of the internet, of network technologies. The value, really, in positive ways for social connections, not just for autistic people but for folks in general, and especially coming through the pandemic.
[00:04:57] I think that the narrative around autistic people, autistic young people, being naturally good at technology is, on the other hand, I’d say socially determinist. It’s this idea of what autistic people are inherently like, and that’s very flattening. It makes these universal assumptions about them, because being autistic doesn’t naturally make you good at anything, I would argue.
[00:05:24] And especially, it also doesn’t account for all these other barriers that exist to being good at technology. That requires access to technology, access to mentorship, the ability to cultivate those skills. And that’s very, very raced and classed and gender specific.
[00:05:44] And so there’s already that narrative around being good at technology that can reinforce the idea of autistic people as largely being those who have been privileged enough to be around technology, which can serve, then, the stereotype that autistic people in general are white cisgender boys.
[00:06:05] The narrative around technology giving young people autism, I think, is very ableist. It evokes a kind of moral panic, which taps into other kind of panics around the causes of autism, which, for the record, are unclear and are being unpacked all the time. But one thing that we do know is that they’re not caused, autism is not caused by vaccines. So, I think this narrative around causes taps into those harms as well.
[00:06:40] You know, what did I actually see in terms of what autistic kids are doing with media and technology? What I saw is that autistic kids aren’t totally different from neurotypical kids and what they’re doing with technology.
[00:06:54] They make YouTube videos, they play Roblox, they FaceTime with friends. But what does make them different, because there are some major differences, what I found is that it doesn’t just have to do with being autistic or the complexity of their needs.
[00:07:15] I talk about in the book that other scholars have discussed this, that the spectrum as a metaphor is useful in some ways and not useful in others because it can potentially enforce the idea of there being something linear, when we can think maybe more about clusters of characteristics.
[00:07:36] But even with that, it’s not just about the autism part. Because I think when we just see autistic kids and their media use through a medical lens, then all you’re really seeing is that diagnosis.
[00:07:49] And when you see the fuller picture, what I saw was aspects of daily life that are very much tied to these other aspects of human difference: what neighborhood you live in, your gender identity, your racial and ethnic background. All of these play a role in media use for all kids, not just autistic kids, but in specific ways for these kids.
[00:08:12] Like, what kinds of neighborhood safety they had. Was it safe for them to go out in their neighborhood alone? Because if not, then media use at home is much safer. What kinds of access to healthcare do they have?
[00:08:26] Do they have appropriate mental health services? Because if not, there’s going to be some aspects of media use around emotional development in particular or behavior that may be much more challenging.
[00:08:39] You know, what kinds of recreational programs do they have access to? The idea of going to summer camp for some of these kids is not possible because there’s nothing affordable for their families to send them to meet their other needs.
[00:08:54] So there might be, over the summer, there might be even more of a gap in learning if media is filling or, you know, other kinds of development, if media if filling more of that time.
[00:09:07] Cathy Hannabach: In many ways, this book project draws on your previous book, but kind of goes in a slightly different direction.
[00:09:15] For those of you who aren’t familiar, that first book, Giving Voice, analyzed how nonspeaking kids with various disabilities use iPads in particular as assistive speech aids. In this book, you get beyond that specific device, and you are looking at, as you point out, everything else that autistic and neurodivergent kids are doing with digital technologies beyond just assistive speech aids.
[00:09:38] I’m curious, given how rapidly tech and media changes, it seems like every five seconds, what are some of the significant differences you found between those projects in terms of how you approached research?
[00:09:53] Meryl Alper: Sure. I mean, one thing I think I’ll talk about is some similarities and then also differences. So, I think in both of these projects I was taking a very grounded theory approach.
[00:10:05] I wanted to understand culturally, socially, politically, economically, what were the differences between what you might read in mass media, what kind of stories are in the news, what you find hyping up, what is on the ground, what did that look like?
[00:10:26] But one difference, I think, between the last book and this one is, that I was looking at kids with various disabilities, not just autism. Although some of, many of, these kids aren’t just on the autism spectrum, they also have ADHD, OCD, other medical complexities that they’re contending with.
[00:10:48] But I was really interested in the last book, I think, sociologically in looking at infrastructure and access, how were these children’s ability to communicate and, by virtue of that, the potential for technology to quote unquote give voice. How is that being shaped by institutional circumstances?
[00:11:11] And because I was interested in social infrastructure shaping access, I spent a lot of time interviewing gatekeepers like school-district technology specialists, therapists, in addition to parents. And I wasn’t able to spend that much time, I observed kids, but I wasn’t able to interview them so much, in large part because they were being failed by institutional politics. They were not able to fully communicate in the ways that they had the potential to because most of them were being failed, whether it was by how the technology itself was designed, by the prohibitive costs of the technology, a lack of training, or miscommunication between parents and educators.
[00:12:04] So for this book, I really did want to forefront autistic children’s experiences and autistic children’s experiences in general, including those with limited access to effective communication. So, there are still definitely parent voices in this book, but they exist to add context to autistic children’s viewpoints and experiences.
[00:12:29] And then because of that, I think another element that is stronger in this book than the last one is that I ended up having quite a few conversations with autistic caregivers of autistic children. And so their insights into their children’s media and technology practices were really, really valuable.
[00:12:51] It’s not that non-autistic parents didn’t have insights to share. But the reasons and motivations and preferences that those parents were able to talk about came from a unique and I think really helpful place.
[00:13:09] Cathy Hannabach: That relationship between disability, sociality, and digital communication technologies is certainly a central theme across this book, across the previous book, and really, I would say, your research more broadly.
[00:13:23] I’m curious how you see that relationship shifting in our current moment, maybe both for autistic youth but also for other communities.
[00:13:32] Meryl Alper: I wrote this book, I finished fieldwork, right at the very, very, very start of the pandemic. I had to switch a couple of my interviews, which were actually re-interviews of some kids and their parents. I think at that point, actually it was before Zoom was as prevalent as it was, so I think I ended up using Skype because I knew how to use that in an interview setting.
[00:13:57] In the conclusion of the book, I do focus actually on those final interviews as a jumping off point. It’s interesting because I feel like in some ways, while as a culture, as individuals, culturally, socially, we are all irreparably changed by the pandemic. And at the same time, there’s a lot of routines or a lot of habits or ways of life or people’s schedules have in some ways, I mean, schools are in large part, I would say, back in person.
[00:14:32] So there’s stuff that is absolutely changed in terms of how we socialize, how we develop new relationships, how we congregate, that is different and some things which are not.
[00:14:49] I think that this book then speaks to broader anxieties about technology altering society or altering the societal fabric or social relations in largely negative and then irreparable ways.
[00:15:05] So I guess a theoretical development or that I offer in this book, which does speak to these broader themes, is this notion of what I call the sociotechnical shaping of sociality, which is a play on the STS theory of the social shaping of technology, which is itself addressing, either talking about the relationship between technology and society in this either socially determinist or technologically determinist way, but thinking about how they mutually shape one another.
[00:15:38] And I felt this need to unpack not just the societal, not just how technology and society shape one another, but also how the idea of the social itself, of social interaction, of social norms, social contingencies, unpacking that because for a lot of these kids, the ways in which neurotypical values are baked into technologies and baked into society affects how their technology practices are accepted or promoted or discouraged in their schools, by their families, by society writ large.
[00:16:24] Cathy Hannabach: In addition to looking at media representations of autism, and you do this in several chapters of the book where you look at fictional characters in a variety of different kinds of media and how autistic youth and their families navigate those representations, you also look at media making, publishing, and cultural production that your interviewees engage in.
[00:16:47] And so it’s this kind of cultural studies focus on simultaneously looking at media production, media circulation, and then media consumption. I’m curious how you see that tri-part cultural studies focus intervening in how autism and media technologies tend to be understood, particularly in neurotypical spaces.
[00:17:10] Meryl Alper: Yeah, so, to go back to that characterization, that mischaracterization, of autistic people as robotic, there’s this myth around liking repetition or liking sameness, and that itself then doesn’t leave much room for creativity, or creativity as defined by neurotypical people. Whereas there’s a whole rich, what autistic people would call autistic culture, autistic cultural production, that maybe doesn’t conform in those kinds of ways.
[00:17:43] So what does that then look like on the ground? This speaks to what I point to at the end of the book in the conclusion and some of my work that’s actually coming out of the book looking at TikTok, looking at the ways that there’s now more tools for media creation than ever, with lower bars to entry, that aren’t very expensive, that are easy to use. So, whether that is autistic adolescents or young adults making videos through TikTok, or kids that I was spending time with using platforms like Scratch or even Google Slides to make interactive games, or to make books.
[00:18:22] And what they were drawn to might tie to particular fandoms and having really intense, deep knowledge of that realm.
[00:18:32] So I would say in some ways that autistic culture and youth might be already tied to a kind of cultural studies purview because some autistic people who their fandoms, the kinds of popular culture that they are very into, it may be part of their own identity as well.
[00:18:49] When it comes to these tools, it means that there’s more autistic kids who are able to share their worldview from their perspective than ever before. That makes some of these really tired, unidimensional, stereotypical depictions of autism just so out of date.
[00:19:10] And I think media, particularly media for young people, is starting to, at the very least, and I say this at the very least because I don’t want it to be tokenistic, diversify what those representations look like.
[00:19:22] I see that in some public television representations of autistic young people. There’s a Power Rangers movie that came out that, included a Black young person, a Black Power Ranger who was autistic. So, you have more that is coming out that is on the mass media side.
[00:19:40] But I think a lot of that is being pushed now by there being young and not just autistic people, but I would say disabled young people in general, who have the ability to speak for themselves than ever before.
[00:19:54] Cathy Hannabach: So, this brings me to my favorite question that I get to ask folks, and that’s why I like to close out every interview with this because it’s really gets at that why question behind all of the work that you do.
[00:20:05] So in the spirit of imagining otherwise, what is the world that you’re working toward? What kind of world do you want?
[00:20:13] Meryl Alper: I want a world where every child feels like a valued member of their community, valued member of their school, because we live in a world where we’re not too many years removed from a culture of institutionalization, a cultural of real harm and violence done to disabled people, whether that is physical or emotional or spiritual. I want to move us toward a world where there is less othering in that respect.
[00:20:45] I also am working toward a world with better mental health care for autistic young people, considering the fact that they are at increased risks for co-occurring conditions like anxiety, depression, disordered eating. There’s a real gap in addressing their specific needs.
[00:21:06] And then within that, I would say lastly but certainly not least, I’m working toward a world in which there’s more attention paid to kids on the spectrum who are marginalized in other respects. One thing that’s really important to mention about this study that is similar to my last one, my last book, is I really take significant effort to have greater representation certainly racial and ethnic representation, nonwhite representation, but also in this book, LGBTQ autistic young people because their experiences, again, in some ways can be very different from other kids on the spectrum, in other ways, quite different.
[00:21:50] And I think it’s really important to delve into the complexity of what the texture of their lives look like because I think that their mental health needs, in their isolation from school communities or from belonging, more broadly is particularly at risk.
[00:22:12] Cathy Hannabach: Well, thank you so much for being here and sharing all the ways that you imagine otherwise.
[00:22:16] Meryl Alper: It’s a pleasure.
[00:22:21] Cathy Hannabach: Thanks for joining me and Meryl for this episode of Imagine Otherwise.
[00:22:26] Meryl’s new book, Kids Across the Spectrums, is out now from MIT Press, and you can learn more about it and Meryl’s other projects in the episode show notes on our website at ideasonfire.net.
[00:22:37] The show notes also include a transcript and teaching guide for this episode with related books, interviews, and resources.
[00:22:45] Imagine Otherwise episodes make for great syllabus additions, and our teaching guides are designed to help students and researchers explore the vibrant worlds of progressive, interdisciplinary scholarship.
[00:22:57] This episode was produced and edited by me, Cathy Hannabach.
[00:23:14] You can also subscribe to the show on our website, ideasonfire.net, as well as your favorite podcast apps.