For this week’s blog, I thought I would share my “mock” TV interview that I did through the RSG program at Medill School of Journalism. Over the next couple of blog posts, I plan on distilling some of the lessons I’ve learned about doing interviews and talk about my experiences – both with this TV interview and the podcast.
Sneak preview: you should have at most 3 core ideas or things you want people to remember no matter the kind of conversation or talk you are giving. If someone is at a BBQ tomorrow and telling other people about their conversation with you (or the talk they heard you give or the interview they heard of yours), what do you want them to be able to remember and relay?
Without further ado, here is my very first live-to-tape TV interview!
Preview: Autism is a medical diagnosis that has attracted much attention in recent decades, particularly due to an increase in the numbers of children being diagnosed and the changing requirements for getting the diagnosis. In parallel online communities around autism—both those supporting individuals, families seeking treatment and those supporting embracing the autism identity—have grown. Other work has shown support groups can be useful for those encountering hardship in their lives. In this paper, I illuminate the tension in claiming the autistic identity within this community. The walls of the community work to keep community members safe, but also set them apart from others on the internet. I see that the Autcraft community goes beyond being a support group for victims of targeted violence, to one that redefines and helps community members embrace their own autistic identities.
What
is autism and what impact does the label of autism have?
Autism has been the topic of much public concern in recent decades, especially since the sensationalized “autism epidemic” swept through the media. As a medical diagnosis, autism focuses on challenges for individuals; such as whether they are verbal, make eye-contact, or are sensitive to change. Often, as a label, autism is given to youth in order to gain accommodations in school, or for medical treatment. Autistic youth often experience various ways in which this label is used to disempower and disenfranchise them.
This is the case for many youth that are a part of an
online community, “Autcraft,” a community centered on a Minecraft virtual world
for autistic youth. While those with autism are often the target of harassment
and violence in online spaces, the Autcraft community has been actively engaged
in making themselves a safe space for youth with autism. Beyond simply keeping
bullies out, however, the community has taken the label of “autism” and turned
it into something positive—a label worth identifying with.
In the Autcraft community, I have found that the label
acts both as a target and as a way for community members to redefine their identities.
Targeting Autism
Concerns over safety of children is
an ongoing concern for parents and other caregivers. This is particularly true
of those with autistic children, as those with autism tend to be targeted both
by their peers and by strangers [32]. Much like other marginalized groups, “autism” is
used as a derogatory term. Further, threats of violence can be found across the
internet, including in the comments section of YouTube videos, a site used by
Autcraft community members. This is especially meaningful as other related work
has shown the embodied experience in these online spaces can be as impactful as
in physical spaces [29]. Unfortunately, these threats of violence can also
result in actual physical harm.
Harassment, threats of violence, and comments about
autistic people killing themselves can have a large impact on those targeted,
such as additional stress and other psychological harm [22]. The harm,
however, does not stop with verbal and written threats. Like other marginalized
communities, those with autism face the very real threat of violence against
them [14,15].
Here is a video related to these threats of violence in the autistic community at large.
Redefining Autism
There is evidence throughout the
Autcraft community of those who are expressing their autistic identity. Autcraft
community members may be learning to understand and accept themselves or their
child as an autistic individual, but they are also learning to deal with
challenges found outside the Autcraft community where they may not find
themselves accepted and face opposition.
[alt-text for embedded tweet picture: autsome, adjective, Having autism and being extremely impressive or daunting; inspiring great admiration. “My autsome child makes me proud everyday!” synonyms: breathtaking, awe-inspiring, magnificent, wonderful, amazing, stunning, staggering, imposing, stirring, impressive; informal extremely good; excellent. “The band is truly autsome!”]
Adopting “autism” and
various forms of the word—as seen in the name of the community “Autcraft”—lends to a sense of identity
with others who have the same or similar medical diagnosis. Aside from using
“aut” or “autistic” in their user names (i.e.,
the names that are displayed with their avatars and forum posts, rather than a
real-world name), the Autcraft community displays this acceptance through the
creation of autism-centric words, such as “autsome.” According to a community
post, “autsome” means, “Having autism and
being extremely impressive or daunting” and “extremely good; excellent.” Scholars have described how those with
disability are often held to a higher standard and those who are “extreme” tend
to be held up as inspirational. This type of “inspiration” frames disability as
something to be overcome, while achieving difficult objectives. However, I
argue that having language such as “autsome” is meant to be inspirational not
for others looking in to the Autcraft community, but for the autistic children
who are otherwise dealing with a barrage of negative language about autism. This reframes autism as an identity that is
worth embracing, rather than overcoming.
Autcraft community members actively work to reshape the
mainstream dialog about autism. First and foremost, members try to lead by
example, following a set of tenets set out by community founders that encourage
and promote good behavior. Community members also engage in outreach to both
educate others and to make their own expressions of their autistic identities
more visible to others. Members of the Autcraft community engage in
activities—much like creating memorials for victims of violence—that purposefully
shed light on the hardships they have faced. These efforts are examples of how
those with marginalized identities fight back against oppression. As scholars, by listening to these
community members and understanding their activities, we can begin to elevate
the voices of those who have long been silenced.
For more details about our methods
and findings, please see my paper that has been accepted to iConference 2019
(to appear in April 2019). Full citation and link to the pdf below:
Kathryn E. Ringland. 2019. “Autsome”: Fostering an Autistic Identity in an Online Minecraft Community for Youth with Autism. In iConference 2019 Proceedings. [PDF]
Acknowledgements: I thank the members of Autcraft for the warm welcome to their community. Thank you to members of LUCI for their feedback and special thanks to Severn Ringland for his diligent editing. I would also like to thank Robert and Barbara Kleist for their support, as well as the ARCS Foundation. This work is covered by human subjects protocol #2014-1079 at the University of California, Irvine. This work is supported by the National Institute of Mental Health (T32MH115882). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
An autism expert and researcher in the field of disability and technology says video games provide a simpler and more understandable interface for people with autism.
Kathryn E. Ringland, LouAnne Boyd, Heather Faucett, Amanda L.L. Cullen, Gillian R. Hayes. Making in Minecraft: A Means of Self-Expression for Youth with Autism. In IDC 2017. [PDF]
Kathryn E. Ringland, Christine T. Wolf, LouAnne E. Boyd, Mark Baldwin, and Gillian R. Hayes. 2016. Would You Be Mine: Appropriating Minecraft as an Assistive Technology for Youth with Autism. In ASSETS 2016. [PDF]
Ringland, K.E., Wolf, C.T., Faucett, H., Dombrowski, L., and Hayes, G.R. “’Will I always not be social?’: Re-Conceptualizing Sociality in the Context of a Minecraft Community for Autism”. Proceedings of the 2016 ACM CHI Conference on Human Factors in Computing Systems, ACM (2016). [Acceptance Rate: 23.4%] [PDF]
In exciting news, Stuart Duncan’s TEDx Talk, How I used Minecraft to help kids with autism, is now featured on the ted.com front page! Check it out (and spot our research being highlighted)!!
Preview: Maker culture values fabrication and production in both the digital and physical realms as well as the sharing of resources. As such, maker culture provides an opportunity to be democratic and inclusive. Likewise, spaces that stem from maker culture, such as makerspaces, provide the same opportunity for inclusion, even for those with disabilities. In this paper, we explore design implications for the creation of inclusive spaces for making and self-expression in the future based on intensive fieldwork in the Autcraft community.
What if makerspaces could be made inclusive and accessible for children who prefer virtual interactions over physical interactions? Stemming from arts and crafts communities and originally focused on physical engagement with materials to be formed and “made” into products, prototypes, and projects, maker culture has evolved to include hacker culture which uses a wide variety of software, hardware, and craft materials. Present-day maker culture includes online and offline fabrication and production, sharing of resources, and social norms around the act of making. Communities of makers inhabit spaces that are built to have a low barrier to entry, support those interested in learning to be makers, and encourage sharing of resources.
In this paper, we explore how “mixed-ability maker culture” supports self-expression in children with autism through an online community centered around the popular game, Minecraft. Autcraft is a community that supports children with autism and is centered on a Minecraft virtual world that embodies maker culture. The Autcraft community’s unique form of maker culture supports self-expression, sociality, and learning for children with autism by providing structure in a virtual space, allowing for and enabling creating and sharing. Our results show how the “mixed-ability maker culture” found within the Autcraft community, supports children with autism in imaginative making and self-expression and we provide design implications for creating inclusive spaces for making and self-expression.
Autcraft is a Minecraft community for children with autism and their allies run by parent volunteers. The goal of the Autcraft community is to have a safe space for children with autism to play Minecraft free from harassment and bullying (for more information visit the Autcraft website). As part of our study, I have been conducting an on-going ethnography within the community (see our paper for details). This study included analysis of activity within the Minecraft server, forums, website, Twitter, Facebook group, YouTube, and Twitch.
Analysis of our data indicates that the constraints and affordances of this virtual environment provide structure for children to create and share in rich and varied ways without the barriers they would typically face in the physical world. By understanding the values in the Autcraft community through a lens of mixed-ability maker culture, we can see how these values encourage and support autistic children in their endeavors in self-expression.
Using a piston object in Minecraft as a table.
Making in Minecraft: Minecraft, at its core, is a game about building with blocks in a virtual world. In Autcraft, community members have created complex, expressive spaces within their virtual world. They have done this through using construction materials found within the world, both as they are meant to be used (e.g., using bricks to pave a walkway), but also in unexpected ways (e.g., using a piston as a table).
Creating to Share with Others: Community members share with other players through the virtual world (i.e., announcing in the chat) as well as through the community forums. Community members can provide advice and feedback in the comments of the forums and in-world when they are touring the creation. This practice allows others to learn from previous building projects, as well as giving builders a sense of pride in their own work. Community members also share with those outside the Autcraft community. Players build and show off their work through platforms such as forums, YouTube, and Twitch—such as through their YouTube “Let’s Play” videos. “Let’s Play” are edited videos of players playing through a video game, giving viewers a first-person experience of playing the game. It is against this cultural backdrop that members of the Autcraft community use their virtual world and the other existing social media to express themselves. This self-expression allows them to foster relationships within the Autcraft community, as well as to reach out to others beyond their community.
Through these results, we’ve found key issues for designing these types of “mixed-ability maker culture” imbued systems.
Accommodations for Access. The virtual world is not immune to the need for environmental accommodations. Modifications allow for those with disabilities to participate in a way that is suitable for them in a space where they might otherwise find themselves excluded.
Bounded Freedom. The boundaries found within Autcraft help enhance the creativity of the members. This includes the boundaries within the virtual world (the world and its resources are finite), the social boundaries imposed by the community, and the expectation that one member’s creative self-expression does not infringe upon another member’s self-expression.
Opportunity-Rich Environment. The Minecraft world is rich – full of objects, biomes, and creatures. This allows users to create narratives and even a mythos from these resources. The Minecraft game itself does not come with a history or backstory but allows players to create new history as the player explores and alters the world. It is this richness that sets the foundation for allowing for inclusivity. Disabilities, even those of the same diagnostic umbrella, are incredibly diverse and experiences occur in a myriad of ways.
Social Support. The presence of moderators, helpers, and peer mentors support expression for community members. More experienced members help the less experienced members learn how to build, where to get resources, and even give tips on how to create forum posts and videos. This social support also comes with the expectation that community members will be inclusive.
Social Conventions. The Minecraft community at large embraces creative players and the Autcraft community continues this trend by encouraging members to express themselves through building, roleplaying, storytelling, and sharing their created content through social media (g., through streaming on Twitch, recording YouTube videos, and posting screenshots in the forums).
These design features support children with autism as they learn skills to express themselves. Designers and researchers interested in creating other technical systems can infuse some of the maker culture to create spaces that foster learning, sharing, and self-expression.
For more details about our methods and findings, please see our paper that has been accepted to IDC 2017 (to appear in June 2017). Full citation and link to the pdf below:
Kathryn E. Ringland, LouAnne Boyd, Heather Faucett, Amanda L.L. Cullen, Gillian R. Hayes. Making in Minecraft: A Means of Self-Expression for Youth with Autism. In IDC 2017. [PDF]
Acknowledgements: We thank the members of Autcraft for the warm welcome into their community. We also thank members of LUCI and the anonymous reviewers for their feedback on this paper, and Robert and Barbara Kleist for their support. This work is covered by human subjects protocol #2014-1079 at the University of California, Irvine.
My QGCon presentation, “Minecraft as a Site of Sociality for Autistic Youth,” is now available on YouTube. My talk starts around the 40 minute mark, but I do highly recommend the other talks from my session as well.
I’m excited to announce we received the ASSETS 2016 Best Paper Award for our work on Autcraft. I presented this work this past week. You can find the slides here.
Kathryn E. Ringland, Christine T. Wolf, LouAnne E. Boyd, Mark Baldwin, and Gillian R. Hayes. 2016. Would You Be Mine: Appropriating Minecraft as an Assistive Technology for Youth with Autism. In ASSETS 2016. [PDF]
Acknowledgements: We thank the members of Autcraft for the warm welcome into their community. We also thank members of LUCI and the anonymous reviewers for their feedback on this paper, and Robert and Barbara Kleist for their support. This work is covered by human subjects protocol #2014-1079 at the University of California, Irvine.
