Meryl Alper

Are you a parent, educator, clinician, or therapist of kids ages 8-13 with a diagnosis of autism and/or ADHD in the Greater Boston area? We are researchers at Northeastern University studying the ethics of XR (extended reality) technologies (like VR headsets and PokémonGo) for neurodivergent children who need your help! Participate in a one-time 90-minute in person focus group where you’ll play with an XR game, watch videos about XR, and have a group discussion about your opinions. Receive a $100 Amazon gift card for your participation. Please contact study PI, Professor Meryl Alper, at m.alper@northeastern.edu if interested.

I’m thrilled to reveal the cover design of my next book, Kids Across the Spectrums: Growing Up Autistic in the Digital Age, which will be published by MIT Press this coming August 2023.

The cover art was created by Jen White Johnson, an immensely talented “Afro-Latina, disabled artist, designer, educator, and activist, whose visual work explores the intersection of content and caregiving with an emphasis on redesigning ableist visual culture.”

Over the years, I’ve drawn inspiration not only from Jen’s artistic work, but her activism as well. In addition to her piece “Follow the Light” being featured on the cover of KAS, I make multiple references within the book to the important advocacy work that she does to “empower and activate change encouraging communities to engage in conversations about acceptance, rooted in how Black Neurodivergent children are valued and seen.”

“Follow the Light” itself perfectly represents the core message of KAS for several reasons:

1) It’s an artistic collaboration between Jen and her autistic son, Knox. As I note in the book, there’s much to be learned about maximizing the benefits of media and technology for children on the spectrum by better understanding and appreciating relationships between neurodivergent parents and kids, like Jen and Knox.

2) As a collaborator, Knox also showcases how young people on the spectrum can be active media creators, not just passive media consumers, as they are commonly assumed to be.

3) Graphically, the image shows a Black neurodivergent child containing multitudes of color and movement. This is symbolically important considering the insidious ways that structural racism and anti-Blackness have been embedded in the history of autism as a diagnosis and cultural category, as well as how non-White autistic children are regularly denied freedoms and expressions of joy in society.

4) The image reflects “the digital” through pixilation without being so overtly technological. Research for the book took place over several years, from 2013-2020, so I tried to avoid overfocusing on any one technological trend or platform.

I can’t say enough good things about Jen’s work, and encourage you to check out her website (https://jenwhitejohnson.com/), as well as her social media accounts (Twitter and Instagram).

Lastly, I’m excited to share that Kids Across the Spectrums will be made available open access online through MIT Press’ Direct to Open (D2O) program, a publishing approach fully aligned with the book’s emphasis on digital accessibility.

More to come this Fall 2023! Please reach out at m.alper@northeastern.edu if you’d like to arrange a book talk or event in Fall 2023 and Spring 2024.

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.

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.

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.

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.