Announcing “Kids Across the Spectrums: Growing Up Autistic in the Digital Age” Under Contract with MIT Press

I’m delighted to share that I’ve recently signed a contract with MIT Press for my next book, titled “Kids Across the Spectrums: Growing Up Autistic in the Digital Age.” Thank you to everyone who has supported me in working on this ambitious project over the past several years.

“Kids Across the Spectrums” will be the first book (academic or trade) to chronicle how kids on the autism spectrum—and across the socioeconomic spectrum—are succeeding and struggling with technology in their daily lives, often-marginalized experiences that I argue also speak to broader questions and concerns about what it means to be “social” with media in contemporary society and amidst a pandemic.

A black keyboard, unattached to a computer, sits atop a small child’s table in the living room of an autistic boy. The table is surrounded by an array of colorful objects, including a TV remote, picture books, and foam letters. (Photo by Meryl Alper)

Over recent decades, assumptions about autistic youth’s “natural” proclivity for technology have underpinned major investments into therapeutic robots and educational apps, as well as workforce training programs in the high-tech sector. At the other extreme, the idea that autistic youth prefer technology over human interaction has manifested in news reports that falsely imply a link between autism, violent video games, and aggressive behavior.

The book centers on the following questions: How are children and adolescents diagnosed with autism actually using media and technology in their everyday lives, of which very little is known? In turn, how might these uses inform more nuanced theoretical understandings of the social and technical worlds, as well as better implementation of technology in therapeutic and educational settings for kids on the spectrum?

Over the past seven years, up through the start of the 2020 coronavirus pandemic, I conducted qualitative research in the homes of over 60 racially, ethnically, and socioeconomically diverse autistic children ages 3- to 13-years-old in Boston and Los Angeles. Informed by ethical, communicative, and practical considerations, I interviewed adolescents, for example, about their technology likes and dislikes, consulted with caregivers regarding their hopes and concerns about remote schooling, and observed autistic children playing video games, chatting on FaceTime, and making YouTube videos.

I found, contrary to popular belief, that what autistic kids are doing with media is not necessarily radically different from their non-autistic counterparts. The experiences that they have though are less explained by their diagnosis alone and more by the intersections of their disability with other aspects of their identity. Youth on the spectrum differentially face significant social and health inequalities—including limited recreational opportunities, poor neighborhood safety, and challenges receiving appropriate therapeutic services—and these disparities spill over into their media use in impactful ways.

As I do not identify as a person on the autism spectrum, the book additionally incorporates the research of autistic scholars who focus on autism from a variety of disciplinary, theoretical, and methodological perspectives, as well as the popular writings of disability activists, journalists, and youth themselves, especially regarding their experiences with media and technology.

At its heart, “Kids Across the Spectrums” is about what it means to be “social” around and through technology. I argue that the lived experiences of autistic youth underscore the intricacies, anomalies, and expectations of the socially mediated world. Implicating autism in the complexity of the sociotechnical disrupts the use of autism a symbol through which social normativity is reinforced and opens up new theoretical possibilities within a hypermediated post-COVID social world.

Northeastern University Study on Media Use Among Children on the Autism Spectrum (Ages 9-13)

Researchers at Northeastern University are conducting a study on how children ages 9-13 on the autism spectrum use media and technology with their friends and family. We are looking to recruit parents/guardians (over the age of 18) in Eastern Massachusetts (greater Boston area) who have a child ages 9 to 13 with a diagnosis of autism, autism spectrum disorder, Asperger’s syndrome, or pervasive developmental disorder not otherwise specified (PDD-NOS). In Part 1 of the study, a researcher will interview parents at home for about 90 minutes about their child’s media and technology use. In Part 2, the researcher will interview the child and observe them at home doing a media or technology activity that they enjoy. The visit will last for about 30-90 minutes. The interview format can be adapted for children who are non-speaking, non-verbal, and/or who use AAC. Parents may also provide communication support to their child if necessary. Participating families will receive a $50 gift card after completing Part 1 and 2. The study has been approved by the Northeastern University Institutional Review Board #16-08-35. Parents/guardians can contact Dr. Meryl Alper by phone at (818) 856-0165 or email at AutismFamilyMedia@gmail.com if they are interested in participating in the study.

Los investigadores de la Universidad de Northeastern están realizando un estudio sobre cómo los niños de 9 a 13 años de edad que caen en el espectro autista utilizan los medios de comunicación y la tecnología con sus amigos y familiares. Estamos buscando reclutar padres / guardianes (mayores de 18 años) en el estado de Massachusetts (área alrededor de la ciudad de Boston) que tengan un niño de 9 a 13 años con un diagnóstico de autismo, trastorno del espectro autista, síndrome de Asperger o trastorno generalizado del desarrollo que no sea de otra manera especificado (PDD-NOS). En la Parte 1 del estudio, un investigador entrevistará a los padres en el hogar durante aproximadamente 90 minutos sobre el uso de los medios de comunicación y la tecnología de sus hijos. En la Parte 2, el investigador entrevistará al niño y lo observará en su hogar haciendo una actividad de medios de comunicación o tecnología que el/ella disfrute. La visita durará entre 30 y 90 minutos. El formato de la entrevista se puede adaptar para los niños que no hablan, que no son verbales, y / o que usan AAC. Los padres también pueden proporcionar apoyo de comunicación a sus hijos si es necesario. Las familias participantes recibirán una tarjeta de regalo de $50 después de completar las Partes 1 y 2. El estudio ha sido aprobado por la Junta de Revisión Institucional de Northeastern University # 16-08-35. Los padres / tutores pueden comunicarse con la Dra. Meryl Alper por teléfono al (818) 856-0165 o por correo electrónico a AutismFamilyMedia@gmail.com si están interesados en participar en el estudio.

recruitment flyer

Recruitment Flyer_Spanish

Must-Read Journal Articles of 2017

I like to do a mass PDF printing before the holidays of any “must-read” journal articles in the communication, technology, and society space published over the past year that I may have missed or filed away for later reflection. (I read plenty on screens all year, and like to wind down over winter break with pens, paper, and lots of underlining.)

After soliciting suggestions from my aca-social network, I’ve compiled a list below for 2017 (one that is by *no means exhaustive*). Besides journal articles published in 2017, there are a number of white papers on the list, as well as articles published at the end of 2016 that may have flown under the radar.

The “General” must reads are the kinds of pieces that I could envision finding a place on a Communication Ph.D. student’s qualifying exams lists, while the “Personal” must reads are those that speak to my particular scholarly interests (disability and digital media, mobile communication, and kids/family technology use.)

I’m open to any feedback, as well as further recommendations based on these. Happy reading (and underlining)!

General

Adrienne Shaw, Encoding and decoding affordances: Stuart Hall and interactive media technologies, Media, Culture & Society.

Alice Marwick and Rebecca Lewis, Media Manipulation and Disinformation Online, Data & Society.

Angèle Christin, Algorithms in practice: Comparing web journalism and criminal justice, Big Data & Society.

Bonnie Ruberg, What is your mother’s maiden name? A feminist history of online security questions, Feminist Media Histories.

Caroline Jack, Lexicon of Lies: Terms for Problematic Information, Data & Society.

Fred Turner, Can we write a cultural history of the Internet? If so, how?, Internet Histories.

John Durham Peters, “You Mean My Whole Fallacy Is Wrong”: On technological determinism, Representations.

Megan French and Natalya N. Bazarova, Is anybody out there?: Understanding masspersonal communication through expectations for response across social media platforms, Journal of Computer-Mediated Communication.

Nabiha Syed, Real talk about fake news: Towards a better theory for platform governance, The Yale Law Journal Forum.

Sandra K. Evans, Katy E. Pearce, Jessica Vitak, and Jeffrey W. Treem, Explicating affordances: A conceptual framework for understanding affordances in communication research, Journal of Computer-Mediated Communication.

Simone Natale, There are no old media, Journal of Communication.

William R. Hobbs and Moira Burke, Connective recovery in social networks after the death of a friend, Nature Human Behaviour.

Personal

Benjamin Burroughs, YouTube Kids: The app economy and mobile parenting, Social Media + Society.

Elisabeth L. Miller, Literate misfitting: Disability theory and a sociomaterial approach to literacy, College English.

Heather A. Faucett, Kate E. Ringland, Amanda L. L. Cullen, and Gillian R. Hayes, (In)visibility in disability and assistive technology, ACM Transactions on Accessible Computing.

Leon J. Hilton, Avonte’s Law: Autism, wandering, and the racial surveillance of neurological difference, African American Review.

Marleena Mustola, Merja Koivula, Leena Turja, and Marja-Leena Laakso, Reconsidering passivity and activity in children’s digital play, New Media & Society.

Pooja Rangan, In defense of voicelessness: The matter of the voice and the films of Leslie Thornton, Feminist Media Histories.

Rayna Rapp, Big data, small kids: Medico-scientific, familial and advocacy visions of human brains, BioSocieties.

Cover Story: How “Giving Voice” Got Its Design

The way I feel about book covers speak volumes about me.

In second grade, each person in our class spent weeks writing, illustrating, and designing our own hardcover books (a big deal compared to “little kid” paper books barely held together with tape, staples, and spit). As you can tell from an original (and only) copy of Rainbow Forest below, I relished the process.

rainbow-forest

As a Ph.D. student procrastinating while writing my dissertation (entitled Home Screen Home: Disability, Distinction, and Domestic Access), I drafted an imagined book cover for it: an embroidered sampler, but instead of having a traditional wooden frame, using the hard metal rim of an iPad.

ipad-home-screen-home

As someone who cares deeply about how books are written, designed, and used as design elements in a space, I eagerly anticipated working on the cover for my recent book, Giving Voice: Mobile Communication, Disability, and Inequality.

giving-voice_cover

The cover was designed collaboratively with the folks at MIT Press, who were receptive and responsive to my input at each step. Stylistically, I was inspired by several images and existing book covers:

The pattern of sound waves, photographed by scientists at Bell Telephone Laboratories in 1950 (Library of Congress).

soundwaves-banner

Vintage book covers about sound from George Giusti in the late 1950s/early 1960s such as Echoes of Bats and Men (1959) and Waves and the Ear (1960).

echoes-of-bats-and-men

waves-and-the-ear

Other scholarly works about disability and/or communication, such as those by Laura Maudlin and John Durham Peters.

made-to-hear

the-marvelous-clouds

We tried to convey several of the book’s core themes in a single book cover. This encompassed:

  1. Voice as motion, and not as a static or solid entity to give
  2. Axis of intersectionality and inequality
  3. The outline of different sizes of mobile devices, created through negative space, and finally,
  4. To consider disability in relation to all three

The cover of Giving Voice also appears one twist away from a hypnotic spiral, a drowsy trance. For while the book’s manuscript was completed months before Trump’s election, the cover was finalized afterwards, casting some shade onto the light.

“Please Read the Article”? Please Cite Women Academics.

I’m not an expert on cyber warfare, nor do I play one on TV—or on Twitter for that matter.

I have, though, published academic research about the cultural claims to legitimacy that policymakers have historically used when responding to perceived threats of youth hackers—work, I should note, that popular journalists have covered and properly attributed here and here.  And as a Faculty Associate with the Berkman Center for Internet and Society at Harvard University, and an Assistant Professor of Communication Studies at Northeastern University, I’m well aware of thoughtful scholarship on how popular culture and technology policy directly and indirectly shape one another.

In doing that historical work on youth hackers, I was thankful for the heavy lifting done by communication scholar Stephanie Ricker Schulte in her 2008 article “‘The WarGames Scenario:’ Regulating Teenagers and Teenaged Technology (1980-1984)” in Television & New Media, as well as her 2013 book Cached: Decoding the Internet in Global Popular Culture, published by NYU Press.  Schulte argues that the 1983 movie WarGames was more than just fun cinematic fare and a box office smash; it also had serious cultural implications for U.S. internet policy during the Reagan administration.  Schulte makes the claim in both the article and her book that WarGames made certain images of cyberwarfare more salient and set the stage for particular solutions to alleged internet security threats.  For her work, Schulte received coverage in press outlets such as CNET, won the Society for Cinema and Media Studies’ 2010 Dissertation Award, and garnered rave reviews in top communication journals.

I say all this to preface the fact that on the morning of February 20, when I read a New York Times article that UVA media scholar (and think piece aggregator extraordinaire) Siva Vaidhyanathan had posted to Facebook, entitled “‘WarGames’ and Cybersecurity’s Debt to a Hollywood Hack,” I was alarmed both by the author Fred Kaplan’s claims to covering entirely new ground on the topic—that ground being WarGames’ cultural influence on U.S. internet policy—and by the glaring omission (at least, glaring to internet and society scholars) of Schulte’s work.

I went to Twitter to bring this oversight to Kaplan’s attention, and also to alert fellow scholars who’ve been down this road before.  Loose recycling of academic research into trade books and pop journalism—and the tendency for the academics in question to be women and for the journalists to be men—is a serious and systemic problem with professional and political implications.  I wrote about the issue in 2014 when tech journalist Evgeny Morozov penned a New Yorker article on Chile’s cybernetic system under Salvador Allende that heavily minimized the contributions of Indiana University professor Eden Medina and her award-winning MIT Press book Cybernetic Revolutionaries: Technology and Politics in Allende’s Chile.  (Professor Lee Vinsel also helped here and here to describe Morozov’s failings, as well as document additional cases of similar behavior by other journalists.)  I couldn’t help but read Kaplan’s piece without wincing—keeping in mind both Schulte’s arguments and this troubling trend of rendering invisible women’s academic labor, specifically critical research about male-dominated fields like computing and gaming.

In response, Kaplan chastised me to “Please read the article, not just the headline”— a response I found belittling, an attempt to undermine my critical literacy skills and dismiss the validity of my objection to the piece.  In other tweets, Kaplan claimed “my book has nothing to do with hers (which I hadn’t heard of till now).”  Not having heard of Schulte’s book says more about Kaplan though, and his failure to do his research before publishing a piece in the Gray Lady, than about the significance of Schulte’s own.  I also never said, as Kaplan insinuated, that he was “sexist” and never once used the term “plagiarism.”  Those kinds of responses quickly foreclose meaningful engagement with difficult issues like the public attribution of ideas online.  But when someone claims that a book is “completely different” from their own, without having actually read said book, I can’t help but find such an answer, well, incomplete.

To repeat, my read of Kaplan’s thesis in his NYT article is that WarGames was culturally influential to the Reagan administration’s cybersecurity policy.  Why would I identify that as Kaplan’s primary claim, besides a cursory glance at the headline?  The lede paragraph of the article reads, “Movies rarely influence public policy, but Washington’s policies on cyberattacks, computer surveillance and the possibility of cyberwarfare were directly influenced by the 1983 box-office hit ‘WarGames.’”  In the conclusion, Kaplan restates the idea that WarGames “sparked the first public controversy over the tensions between security and privacy on the Internet, as well as the first public power struggle about the subject between the N.S.A. and Congress — a debate and a struggle that persist today.”  Even the subtitle on the WarGames film still that accompanies the article reads, “The film led to the nation’s first directive about computer security.”  Kaplan may be the first person to write on the topic this week (a week with heightened anxieties about cybersecurity due to tensions between Apple and the FBI over unlocking the iPhone of the deceased San Bernardino shooter), but timeliness should not be conflated with novelty.

One could go deeper, reading Kaplan and Schulte’s work side-by-side.  For example, Kaplan writes that in 1983, “The first laptop computers had barely hit the market; public Internet providers wouldn’t exist for another few years.  Yet [national security decision directive] NSDD-145 warned that these new machines—which government agencies and high-tech industries had started buying at a rapid clip—were ‘highly susceptible to interception.’”  Schulte similarly frames her story in relation to the general populace’s experiences, or lack thereof, with personal computers and the internet at time.  She writes on p. 489 of her Television and New Media article that, “Although home computer ownership surged in the late 1970s and early 1980s, modem use did not.  As a result, in the early 1980s most Americans learned about the internet through popular culture, like WarGames, and news media outlets, before they experienced it personally.”

When a thoroughly researched and well publicized treatment of a narrow topic exists, I believe that anyone writing on the topic—be it a tech journalist or a historian of technology— is obligated to acknowledge the existence of that source.  (As a helpful reference, MIT student J. Nathan Matias has written a blog post on acknowledging other scholars’ work for a public audience, and worked with Atlantic staff writer Adrienne LaFrance to analyze gender bias in tech reporting too.)  In a highly visible forum like the New York Times or the New Yorker, where one stands to financially profit from plugs for an upcoming mass-market book (as is the case with Kaplan), supplementation of prior work should be made transparent for readers, who are unlikely to come across academic press titles like Schulte’s while mulling about the airport book kiosk.  Even if Kaplan’s own primary sources led him in the same direction as Schulte, she scooped him.  And in journalism, if you’ve been scooped, you give proper credit to the original reporter.  Yet it’s usually well-established men with wide readerships and banked up cultural capital who stand to benefit the most from ambiguous journalistic standards.

In short, the next time I get implored by a male journalist to “please read the article,” I will kindly suggest please citing the work of women whose fascinating and creative scholarship clearly precedes them.

WarGames-Sheedy-and-Broderick-on-computer

Considering the overall gender problems of “WarGames,” with Ally Sheedy mainly resigned in the movie to looking over Matthew Broderick’s shoulder as he types on the computer (as pictured here), this photo is particularly apt for a discussion of systemic gender bias in source referencing.