I’m happy to announce that I will be the opening keynote at the Education in Games Summit this year in Melbourne, Australia, October 14. This summit is for school teachers to learn more about using games in their education practices. I’ll be talking about my Autcraft research, as well as speaking more broadly about how we can use games in inclusive education.
Tag: Autism research
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!
Recently, I was interviewed for the Xceptional Leaders podcast series. In a follow up blog, I will relate some of my experiences with that recording.
I recently gave an interview to the Xceptional Leaders podcast series. You can listen here or search for it on your podcast app of choice! “Social Research Related to Neurodiverse Gaming with Dr. Kathryn Ringland”
In this podcast I discuss my research with the Autcraft community. If you want to know more, I encourage you to read some of my blog posts!
If you would like to know more and get updates about my new nonprofit, the Kaina Institute for Equitable Research, please bookmark our website: https://www.kainainstitute.org/
Was there something I said in the podcast that got you curious? Please feel free to leave a comment here or tweet @liltove on Twitter or comment on my Facebook page!
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.
I’m happy to report my paper, “A Place to Play: The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces” has received Honorable Mention for CHI 2019. Below is a link to the PDF!
Abstract: Play is the work of children—but access to play is not equal from child to child. Having access to a place to play is a challenge for marginalized children, such as children with disabilities. For autistic children, playing with other children in the physical world may be uncomfortable or even painful. Yet, having practice in the social skills play provides is essential for childhood development. In this ethnographic work, I explore how one community uses the sense of place and the digital embodied experience in a virtual world specifically to give autistic children access to play with their peers. The contribution of this work is twofold. First, I demonstrate how various physical and virtual spaces work together to make play possible. Second, I demonstrate these spaces, though some of them are digital, are no more or less “real” than the physical spaces making up a schoolyard or playground.
Kathryn E. Ringland. 2019. A Place to Play: The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces. In CHI 2019.
Lovely write up about the DanceCraft study by the Informatics department here at UCI: http://www.informatics.uci.edu/informatics-ph-d-student-introduces-dancecraft-to-oc-autistic-children/
Preview: Those with disabilities have long adopted, adapted, and appropriated collaborative systems to serve as assistive devices. In a Minecraft virtual world for children with autism, community members use do-it-yourself (DIY) making activities to transform Minecraft into a variety of assistive technologies. Our results demonstrate how players and administrators “mod” the Minecraft system to support self-regulation and community engagement.
A calming, quiet garden in Minecraft.
“Need a place to calm down? Quiet? Peaceful? Choose a Calm Room to visit here. In these rooms [t]here is no chat. It’s a place to relax. Visit any time.”
If a child finds face-to-face conversations challenging and feels isolated from their peers at school, where can they go to make friends? How can people use currently existing systems to help those with disabilities, including children with autism? We studied how one online community, Autcraft, through a variety of social media platforms, augments and extends current platforms and transforms them into assistive technology for children with autism.
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.
Our analysis demonstrates how players and administrators “mod” the Minecraft system to support self-regulation and community engagement. This work highlights the ways in which we, as researchers concerned with accessible and equitable computing spaces, might reevaluate the scope of our inquiry, and how designers might encourage and support appropriation, enhancing users’ experience and long-term adoption.
Autcraft community members have modified Minecraft to do the following to help players internally regulate themselves and externally manage their engagement with others:
- Self-Regulation. Community members use Minecraft in a variety of ways to self-regulate, including both sensory regulation and mood regulation. Dealing with sensory overload can be a difficult experience for anyone with autism, particularly for children and adolescents who are still learning coping skills. Members of the Autcraft community have created spaces within the virtual world and the other platforms to help even the youngest members learn to deal with these sensory needs. Additionally, to help regulate mood, members are able to put into words their emotional experiences, safely share and vent their feelings with others, on the forums and through in-game chat. They can do this in Autcraft without the fear of reprisal from bullies or trolls—which is something they may fear in other online spaces. While this type of behavior may not be unique to Autcraft, the ability to vent in this safe space is possibly unique for the community members personally. They may have communication challenges in their physical environments that limit their abilities to express their feelings fully.
- Interacting with Others. Members of the Autcraft community have appropriated the entire ecosystem of technologies surrounding Autcraft to support interfacing and engaging with others. These efforts support engagement with both the internal community and across community boundaries by supporting sociality explicitly. One mod, teleportation, enables players to jump from one place to another in the Autcraft virtual world nearly instantly. This mod, which can be found on a variety of Minecraft servers, creates a “safer” virtual world experience and to support socialization among community members. Teleportation is available through various waypoints within the Autcraft Spawn area as well as through the text chat window. This teleportation functionality not only enables these quick avatar interactions, but also gives community members an ability that they do not have in the physical world. This helps support empowering these young community members to engage in socialization with their friends, when and where they choose.
Individual players appropriate the Autcraft virtual world to suit their own needs, shaping their virtual environment, embodied experience, and, in time, influencing the overall experience for everyone in Autcraft. As the children worked within the confines of the virtual world to make their environment more usable by appropriating with what was available, administrators are able to then iterate on these appropriated instances to re-appropriate the software itself. Thus, administrators, following the cues of the children within the virtual world, are able to instantiate these appropriations and make them available to everyone on Autcraft.
As a group, children with autism are doubly disempowered: both as children and as people living with disabilities. Here, however, we see how this kind of technological openness allows them to customize and create their own play spaces, a type of autonomy that is inherently empowering. This work explores how designers and researchers can learn by observing how even the youngest of users augment and appropriate mainstream technology to become assistive in their daily lives. This work highlights the ways in which researchers concerned with accessible and equitable computing spaces might reevaluate their scope of inquiry and how designers might encourage and support appropriation, enhancing the individualized experience and long-term adoption of assistive devices and systems. The appropriations we observed in Autcraft point to a future model where child-initiated modifications can guide research and design, providing greater access for disempowered communities.
For more details about our methods and findings, please see our full paper that has been accepted to ASSETS 2016 (to appear in October 2016). Full citation and link to the pdf below:
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.
Related Posts:
SCMS 2022: The Serious Business of Accessibility in Playful Community Spaces
This is a summary of the work presented at SCMS 2022. This is cross-posted on Medium: https://medium.com/p/d8ebbe436fa2 Play happens everywhere ...
Interview on ABC News (Australia)
Watch my interview with the ABC News about Minecraft for autistic kids ...
Article about Minecraft at The Conversation
I've written up a piece leading up to my keynote speech at the Education in Games Summit 2019 in Melbourne, ...
Did you miss Part 3?
March 2013: UC Irvine Visit and THE Decision
After leaving Boulder and hearing what students there had to say about their school, I was more inclined to accept Irvine’s offer. I wasn’t going to say with 100% certainty until I had visited the school and made sure I clicked with the people there, but based on the research that was happening and what I heard from others, Irvine was the way to go.
It did not take me long to feel like my initial instincts were correct. I got off the plane and already felt like I had come home. Now, I had to be cautious, because in a lot of respects, I had come home. I spent the first 12 years of my life in Southern California. I had decided that Kyle, my husband, needed to come with me on this visit. If this was going to be our home for the next 5+ years, I wanted to make sure it was going to work for him. He was not as impressed at first as I was. I knew what he meant about it not being “green”. The Pacific Northwest is definitely a lot greener, but I think that’s probably not the best reason to turn down a grad school offer. J I also have to say the women huddled around the hot chicken case at the Whole Foods because it was under 70 degrees outside was extremely humorous.
When I checked us into the hotel, I was given a “goodie” bag with snacks and a folder full of information about the school and department. I think the snacks were a really great touch, even though I couldn’t eat most of them. I did enjoy the pudding cup and the Star Wars gummies. The information packet was definitely overwhelming. It had lots of information on what research was going on and other facts about the school. It also contained a hardcopy of my acceptance and award letter. There was also a schedule for Friday, which included what professors I was going to interview with.
Thursday night we had a dinner with the current Informatics grad students. It was great waiting in the hotel lobby and meeting up with some of the people I had met in Boulder. Already knowing a couple people made the whole experience slightly less daunting. The current grad students picked us up and we had a big dinner together. I got to meet my roommate that I will be staying with in Paris for CHI. I also met other students who I would potentially be working with in the future. And apparently my reputation preceded me because at least one of them already knew of me. I am going to admit, it was completely surprising, but also felt pretty good.
I came back to the hotel feeling very excited for the next day. If the grad students were any measure, I was really going to like this place. I’m going to admit, it was hard to share these experiences with Kyle and give him a good sense of how I was feeling. I think my excitement (and exhaustion) was pretty obvious though.
The next day, Friday, I got up early and had breakfast with Kyle. I then waited for the shuttle to take me over to the school. Apparently, there was some confusion and only have of the prospective students had signed up for a ride, so the whole day started a little more slowly than anticipated. We drove straight to the Bren School of Information and Computer Science. I received an additional packet of information that was more general to the entire School. The morning was spent going over all the great things about the school, “the second happiest place on earth” (after Disneyland, of course). Then we broke down into subgroups of Informatics, Computer Science, and Statistics. We spent more time talking about the Informatics department specifically. I learned about the degree, what kinds of courses I would be taking, the research, how the department operates. One of the things that really caught my attention (and this had come up at the grad student dinner as well) was that there seemed to be a lot of collaboration and cooperation. It didn’t feel like there was negative competition, it was more like everyone was trying to help everyone else out. That’s the sort of environment I was looking for.
Then I got to meet with three professors. While they all had really interesting research that I could see myself working on, I knew as soon as Dr. Gillian Hayes told me about the Autism Research Center, I was hooked. This was the sort of assistive tech research that I wanted to be doing. I told her in the interview that I was set to come to Irvine straight away. How soon could I start working?
**
I feel extremely fortunate that things have worked out this way. I feel lucky that I found a department that feels good and an advisor that I felt an immediate connection to. I know the road ahead will be challenging, but I’m happy that I chose this road or that this road chose me. However that works out.
