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Tag: grad school (Page 1 of 6)
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.
How to handle multiple authors, get a your paper written, and not drive everyone crazy
For those just starting out in the paper writing process: Welcome! It’s an exciting journey! In the field of HCI, having multiple coauthors is normal. So, in the spirit of helping everyone out, here is a handy guide to help manage the project of getting a paper written when there are multiple coauthors. (And honestly, some of this is probably good if you’re solo on a paper, too.)
A PDF version of this guide is available here.
Step 1. Establish norms among the authors.
- Versioning: how will you handle multiple versions of the paper? Where will they be stored? Who will have access to them? What software will you be using?
- Along with versioning, set clear norms around document names and stay consistent for the entire lifecycle of the paper.
- Authorship: clearly identify tentative author order,
explain community norms to outside authors, establish expectations of %
contribution
- This also means establishing when various authors on the team will be involved. Some may come in at the end to shape the discussion while others might help with literature review. This should be decided upon now to avoid surprises down the road.
- Set deadlines. Be flexible. Know that everything will probably take 3x longer than you expect.
Step 2. Early-stage Drafts.
- Adhere to versioning established in step 1.
- Co-writing or tandem writing is fine for early stages of writing. This includes splitting up the sections between different authors. Be sure everyone is aware of what everyone else is doing to avoid doubling up on the work.
- When making big conceptual decisions about the paper, consult all of the authors involved for feedback.
Step 3. Later-stage Drafts.
- After some agreed-upon time (as most sections are filled in, for
example), move to writing in sequence, rather than parallel. This helps avoid
having a choppy sounding paper and makes sure things like the overarching
thread is pulled throughout the paper.
- This means someone will have the “lock” on the paper. Establish norms around how this is specified and handled. This can be a simple “I have the lock” to the group via email (or slack), meaning no one else should be working on the draft. Or using file names in the shared folder to indicate when a draft is “in progress” or “done.”
Step 4. Final Draft & Submission.
- Congrats on getting to a final draft! Be sure all authors have signed off on the final version before submitting.
- Be sure to send the final version after submission for everyone’s records.
Step 5. Revisions & Camera Ready.
- Co-authors are great for sharing the joy of an acceptance or commiserating over a rejection. Be sure to be clear about who will be helping with revisions if needed.
- If a paper is being resubmitted to another venue, this entire process starts over again. Good luck!
*Other Thoughts*:
- Clear, frequent communication is key. Ghosting your co-authors isn’t cool.
- This process is hard and everything I mentioned above are skills. That means the only way to get better is through practice.
What other things are important to remember about the writing process? Leave a comment below!
I am happy to report that i successfully defended my dissertation April 26, 2018! Thanks to the many people who supported me and helped me along the way. It’s been a wonderful, exhausting, yet exhilarating journey. I’d especially like to thank my committee (especially my chair and advisor, Gillian) for giving of their precious time to engage with my work so deeply.
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.
The OC Register covered part of our research on dance for kids with autism yesterday. Check it out!
What the news article doesn’t mention is that along with dance lessons, the participants also get to take home the DanceCraft system so they can keep practicing their dance moves.
I’m happy to announce I have been awarded as a Public Impact Fellow for 2017.
Public Impact Fellowships highlight and support doctoral students whose current research has the potential for substantial impact in the public sphere. Ideal candidates will be involved in research designed to significantly improve or enrich the lives of Californians and/or national and global communities.
Earlier I posted a blog summarizing my findings from my ASSETS 2016 paper. I’m happy to report the slides from my talk can be found in pdf form, as well as here as a slide show. I hope to have a more accessible YouTube version of my talk soon.
Would You Be Mine: Appropriating Minecraft as an Assistive Technology for Youth with Autism from Kate Ringland
ACM is allowing free downloads of the official version of the paper for a year. So go ahead and download that now!
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]
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