Tag: researchblog (Page 1 of 2)

Understanding Mental Ill-Health as Psychosocial Disability: Implications for Assistive Technology #ASSETS2019

Preview: Psychosocial disabilities can be found in a large portion of the world’s population and consist of different disabilities including mental ill-health such as depression and anxiety. Psychosocial disabilities has been widely understudied in assistive technology research, but there is a great potential for assistive technology to be able to support people with psychosocial disabilities. Our investigation draws on interviews conducted with 18 people who have complex health needs that include mental ill-health. This work highlights the potential role for assistive technology in support psychosocial disability outside of a clinical or medical framework.

What are psychosocial disabilities?

Anxiety, depression, and many mental health concerns can be categorized under psychosocial disabilities, therefore, recognizing the actual or perceived impairments these concerns create in daily life. Importantly, a large portion of the population (1 in 4 worldwide) have been diagnosed with a mental health condition. This does not even consider those who have not been formally diagnosed because they have not sought diagnosis or meet the “threshold” for clinical definitions. Therefore, people with psychosocial disabilities make up a large portion of the world population.

There are a number of issues surrounding psychosocial disabilities that we address in this paper. First, many psychosocial disabilities are experienced alongside physical disabilities. However, a holistic approach to supporting these disabilities is widely underdeveloped and understudied. Medical care, for example, is widely siloed for different disabilities and health conditions with treatment for physical and mental health concerns happening separately. Second, while disabled people often face issues such as stigma or oppression, for those with psychosocial disabilities these issues are complicated by the invisibility and unique history of mental illness and health. As a result, to this day, many people are hesitant to disclose their psychosocial disability and the severity of the impact of their disability. Third, for the field of assistive technology, there has generally been greater attention to physical disabilities than psychosocial disabilities. Our investigation draws on interviews conducted with 18 people with complex health needs (such as having diabetes, heart conditions, or cancer) along with mental health concerns. Our results suggest that mental health symptoms are disabling for these individuals, as they disrupt a number of valued activities and roles. In addition, these disruptions often recur over time, and may be mutually reinforced by physical health symptoms. Yet, despite the challenges of mental health concerns, many individuals avoided medicalizing their mental health symptoms or discussing them explicitly as “disabilities.”

Overview of Study Results

After interviewing participants in our study we found three themes: (1) disabling experience of personal health, (2) how they talk about their personal health, and (3) how they care for their mental ill-health.

Disabling Experiences of Personal Health

Disabling experiences from personal health concerns occurred for our participants across their lives, from both their physical and mental ill-health. Specifically, they had to plan around some of their mental health concerns in order to continue living their lives. For example, one participant knew they would not be doing anything too intensive or stressful during the month of February because they will be upset or depressed during that time.

Taken together, their physical and mental health impacted their experiences of disability, often impacting one another. For example, a participant who was having difficulty walking without an assistive device found the lack of exercise was impacting his depression to her detriment. Being able to use her rollator to go for daily walks helped lessen the disabling impact of her depression.

Talking about Personal Health

The way participants talked about their personal health differed depending on if they were discussing their physical health or mental health. Much of physical health experiences were discussed in a matter-of-fact manner. They used things such as diagnostic labels and they didn’t provide contextual information or circumstances around the physical health issues. In contrast, for mental ill-health experiences, they had a spectrum of ways of framing their concerns. Some did not take up the diagnostic labels. For example, they might describe some symptoms of depression but then insist they do not actually have depression. Others found that the context and circumstances influenced whether they had a specific diagnostic label. For example, they might only be anxious because of their financial situation and not otherwise have anxiety. Partially because of these framings, participants would wait until their mental ill-health was severe or quite disabling before seeking help. These framings and discourse around their mental ill-health also influenced who they would talk to about their mental health concerns. This appeared to be related to worries about issues such as stigma. Some participants were careful which friends and family members they discussed mental health concerns with, while others were even hesitant about discussion with certain medical health providers. Consistently, participants thought carefully about the consequences of disclosing.

Caring for Mental Ill-health

While participants varied in how they thought about and discussed their mental ill-health, they also varied in the ways they took care of themselves with regards to mental health. Because of the broader framing around health, many participants relied on the healthcare system to support and care for their psychosocial disabilities. Participants had a range in how they felt about medication, with some taking medication for mental ill-health and others not wanting to “cover up” their problems with medication.

However, beyond the medical healthcare system, participants all used other self-management practices to help with their psychosocial disabilities. They discussed a broad range of skills including exercise, being social, meditating using applications, posting reminders for themselves in frequented spaces, and cognitive exercises such as thought restructuring (a common therapeutic tool). They used these tools in order to be able to participate in their daily lives.

Neon sign that says "breathe"

Call-to-Action for Assistive Technology Community

Viewing the whole person beyond the medical context.

Our findings indicate that the complex co-occurring nature of physical and psychosocial disability should be recognized, such that ill-health is viewed holistically. Such an understanding requires health professionals to gather and understand rich contextual information about individuals, as would likely occur through recurrent, engaged contact in which individuals can share their personal experience of their physical and psychosocial disabilities. Assistive technologies could support this interaction by facilitating documentation of patterns and experiences occurring outside of health appointments, potentially contributing to care providers’ understanding of lived experiences of both mental and physical ill-health, and their interrelationship, and informing clinical conversations that are more person-centered and responsive to impairments in daily life.

Knowing that stigma may also be a barrier to these conversations, technologies could aim to empower individuals to speak about their psychosocial disability within the health system and more broadly. In the physical health domain, some research has explored how individuals with invisible disabilities manage demands to repeatedly disclose their disability, as well as how this might impact the design of assistive technology. For example, assistive technology may help disclose or partially disclose a disability in order to help a person gain access or get support from people around them as needed (such as business cards explaining a psychosocial disability). In addition, technologies could support individuals gaining skills and experience relevant to disclosing a psychosocial disability. For example, through simulations of conversations with health providers, or by facilitating peer-to-peer communication so that individuals gain positive initial disclosure experiences that empower them to disclose further.

Reframe research and design to match user experiences.

Given the variety of ways that individuals with psychosocial disability use and view labels, and the numerous factors that influence these framings, designers of assistive technology must be mindful of how resulting tools are introduced to people. Framing in terms of “wellness,” for example, rather than mental ill-health or psychosocial disability may increase acceptability. It will also be important to frame technologies such that they appeal to individuals when they are not actively symptomatic, but when they might nonetheless maintain their good health through self-management. Within this exploration of framing, there is opportunity to meet individuals with disabilities where they are and find language and labels that work for them, rather than adopting a top down application of labels common in medicine. Future research might more directly investigate how individuals make decisions about adopting labels related to psychosocial disabilities and mental health diagnoses.

Moving away from a solely medical model of psychosocial disabilities.

Within the assistive technology community, tools to support those with psychosocial disability are rare. However, within behavioral science, interest in the use of technological tools to support mental ill-health is rapidly expanding. Digital mental health is the use of information and communication technologies to improve mental health. However, the majority of digital mental health tools are developed to address mental health concerns from a medical perspective (that is, a focus on psychopathology and symptom control). By viewing technology through this purely medical lens, designers may overlook opportunities for technologies to enhance other aspects of people’s lives. In order to find common ground in medical and social research and design for people with disabilities, we propose bringing the medical and assistive technology communities together to learn from each other. Adopting a view informed by a psychosocial disability model may suggest different outcomes of concern, centering the experiences and values of the disabled individual.


Researchers in medical fields, such as behavioral health, have done a great deal of work in creating support, tools, and care for individuals with psychosocial disabilities. And, in fact, some assistive technology has been based directly off this work. However, more work can be done to help merge a social model view of psychosocial disability with this work in medicalized fields. With a social lens, creating assistive technology for people with psychosocial disabilities can be supportive, empowering, and will re-center people with disabilities, allowing their experiences to be the catalyst of technological change.

handicap sign on pavement, dirty from road

For more details about methods and results, please read the full paper.

Kathryn E. Ringland, Jennifer Nicholas, Rachel Kornfield, Emily G Lattie, David C. Mohr, and Madhu C. Reddy. 2019. “Understanding Mental Ill-health as Psychosocial Disability: Implications for Assistive Technology.” In Proceedings of ASSETS 2019. [PDF]

“Do you work for Aperture Science?”: Researching and Finding the Gamer Identity in a Minecraft Community for Autistic Children at #FDG19

Preview: For members of the Autcraft community, they are not only coming to terms with their identity as autistic individuals, but they are also playing with and practicing other identity roles. In this article, I briefly discuss the impact of the “gamer” identity. I also explore some possible implications for researchers who are interested in—or concerned about—games.

Disability and Play

Throughout history, disability has been a part of interactions and relationships in society as a way of creating the category of “other” and, therefore, ensuring the dominance of the category of “normal.” As an aspect of their life, a person’s disability seems all encompassing. This leaves little room for any other aspects of their identity or life. Not only is the person then defined by their inability to interact or engage in the world, but they are then not seen as having ability in anything. This includes those who play games. People with disabilities are seen as not able to play—or maybe not even interested in playing.

In this work I continue to analyze data from my virtual ethnography of the Autcraft community—a community for autistic kids who play Minecraft. You can read more about it here.

Background: Problematic Video Games?

There are a lot of concerns about video games, especially when it comes to children playing them. These concerns range from misbehavior, addiction, and bullying. This is especially true for autistic children. Many researchers have gone to great lengths to show the negative aspects of games for autistic people.

However, while many people don’t realize it, a lot of what is happening in these video games is a very social experience. As I have shown in my other work, the community members of Autcraft are playing with each other, making friends, and gaining confidence in their own social abilities.

Finding Identity

In this paper, I show how not only are the autistic community members of Autcraft embracing their identities as autistic people, they are also embracing and practicing the identity of “gamer.” They post to the forums about games, apply to be YouTube content creators, and embrace other aspects of nerdy game culture.

While they are trying on these different roles, this is complicated not only by their autism, but also by exploration of gender identity, among other roles. This is especially important given how hostile some gaming environments can be for those who are straight men. By focusing on one identity, it’s easy to lose sight of these other emerging aspects of the community members’ lives.

Implications for Research

There are two implications for research from this work.

  1. Promoting pro-social gaming. There has been a drive to understand the negative aspects of gaming, however less has been explored in the positive. Especially for individuals with disability or difficulty accessing other forms of sociality and play, games can be a great resource.
  2. Need for broader understanding of individual players. There is a need to look at players through an intersectional lens. Players are not only gamers (or not, depending whether they adopt this label or not), but also have varying ability and disability, gender identities and expressions, cultural and racial identities, and so on. By narrowing the scope too much, we sometimes will miss the important intersections of these identities and their impact on the person’s access to play (and social interactions).

For more details about our methods and findings, please see my paper that has been accepted to FDG 2019 (to appear in August 2019). Full citation and link to the pdf below:

Kathryn E. Ringland. 2019. “Do you work for Aperture Science?”: Researching and Finding the Gamer Identity in a Minecraft Community for Autistic Children. In FDG 2019. [PDF]

Acknowledgements: I thank the members of Autcraft for the warm welcome to their community. Thank you to Chris Wolf, Amanda Cullen, Severn Ringland, Kyle Lee, and the anonymous reviewers for their feedback on various iterations of this work. Special thanks to: Gillian Hayes, Tom Boellstorff, Mimi Ito, and Aaron Trammell. Thank you to Robert and Barbara Kleist for their support, as well as the ARCS Foundation. 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. This work is covered by human subjects protocol #2014-1079 at the University of California, Irvine.

CHI 2019 Recap Part 3: Social Impact

This is a continuation of my series of blogs recapping CHI 2019. You can catch up with the first blog, if you missed it, and the second blog on self-care at conferences. For this week’s blog post, I am focusing on social justice and the social impact of research. A number of problems with accessibility arose during the CHI conference, which led to, among other things, a protest by disabled scholars during the CHI Town Hall.

But on a more positive note, this year at CHI, my advisor, Gillian Hayes, won the social impact award. You can and I highly recommend watching the full speech about doing socially impactful work in the CHI community.

As researchers, we are in an enormous place of privilege to be able to do the work we are doing. This privilege did not necessarily come easily and those that are more junior have to work harder than ever to earn that privilege. We have worked hard to educate ourselves. Speaking of which, if you want the list of recommended books from Gillian Hayes’s talk check it out here. However, the number of articles coming out about grad student mental health (as in, they are not healthy) is growing. Young scholars coming from marginalized groups are finding it more challenging to stay in academia, with many leaving altogether. How can we leverage the privilege we have not only to help the communities we work with, but elevate them? How do we elevate those within our own walls that get discounted or even out-right oppressed? This work is hard, but we do not need to make it so very hard, especially if we have any hopes of increasing diversity.

Social impact in research means building relationships in the communities we work in. And relationships means building trust and a true understanding what people need. My own Autcraft work is an example of how I worked closely with a community to help them understand their practices and they were able to leverage my work to help them reach their own goals.

A paved road starting in foreground and going to horizon, fall leaves on trees in mid-ground, and snowy mountains in the background.
The road ahead is for you to choose, but remember the choices you make impact everyone.

As a sneak peek: Along with my cousin, the wonderful Annie Forsman-Adams, I am in the process of co-founding a nonprofit organization, The Kaina Institute for Equitable Research, to continue some of my community-based work. There are many paths to doing research that has a positive impact on communities and still furthers one’s own research agenda. Let’s all keep up the good work and push ourselves even further. Let’s see what kind of force for good we can be in the world.

CHI 2019 Recap Part 2: Importance of Self-Care and Community Care

This is a continuation of my series of blogs recapping CHI 2019. You can catch up with the first blog, if you missed it. For this week’s blog, I am focusing on the importance of care. This takes many forms, but for this short blog, I’ll be honing in on self-care and community care. Both of these are about taking care of the individual, but one (self-care) implies the individual is taking care of themselves and the other (community care) implies that the group as a whole is making space and watching out for the individuals.

a row of people sitting writing with notebooks in their laps, their heads are cropped out of the photo

Self-Care

Conferences are hard. They are taxing on the body both physically and emotionally. CHI 2019 took place in Glasgow, Scotland. This means that many of the community experienced some kind of jet lag. And this is the case for every conference. Some people will be experiencing jet lag and the other effects of having to travel long distances. Then when you get to the conference, there are thousands of people. Rooms are crowded, halls are noisy, many people are consuming alcohol at evening functions. Through all of this, early career scholars are expected to show up, be engaging, and network like mad. Conferences are hard.

My advisor, Gillian Hayes, gave the best advice before my first conference. It’s okay to not go to every session. It’s okay to skip certain events. Quality over quantity. Take care of yourself. Save your energy for those key interactions that you need to further your career, your research, or your learning. As is the case with all of academia, learn to say no to things. To that end, I’ve learned that I would rather save a bit more money at home in order to be able to stay at a hotel closer to the conference or to be able to order in room service for a night when I just can’t face going out to eat one more time. I realize that that is steeped in privilege. Conferences are not only hard, but they are expensive – CHI especially so. My only rationale is that my moments at CHI, having quality interactions with people, will help further my career in incalculable ways. I’m banking on it, and whether this will actually pay off in a tenure track job in the long run remains to be seen.

a steaming cup of coffee on a table top

In summary: Take care of yourself before, during, and after a big (or small) conference. Listen to your body. Focus on quality interactions over quantity.

Bonus tip for students: Make a list of 5-10 people you would really like to meet or touch-base with while at the conference. Focus on that list and make those your quality interactions. You’ll thank your tired self later.

Community Care

This one is a little trickier. As I’ve said, conferences are hard. We can all help make each other’s conference experience better. I will get into the larger, organizational issues of these big conferences like CHI in my next blog post, but for now I will focus on the community-on-the-ground. This could be simple things like, if you’re chatting with people, try to get out of the way so you can all hear each other and you aren’t in the way of those trying to get through. Maybe this looks like simply not guilting people into going to the late parties or finding safe spaces for women and other marginalized community members. This also means accepting help when others offer it (an important part of self-care!). I’ve seen a lot of positive movement in this area, especially at CHI. But, of course, there is always room for improvement and we should strive to find ways to help each other out.

dark leafy background with pink neon letters that spell breathe

CHI can be a wonderful experience if done right. I have had conference experiences where I’ve just felt ill the entire time and ended up not getting much out of it. I then I have to ask myself why I spent money to even go in the first place (because let’s be real, as a student or postdoc, you’re losing money even if you’re getting reimbursed).  But I’m happy to say that prioritizing my own self-care and looking out for others has really improved my overall CHI experience. I hope these tips are helpful for you as you plan your next conference trip!

CHI 2019 Recap Part 1: Play and Technology

Given that I’ve recently returned from CHI, I thought I would write up a few of my thoughts in a little mini-series of blog posts. Some, like this one, will be related to research, while others will be related more to going to the conference and my reflections on academia and HCI more broadly given my experiences in Glasgow.

an open diary with blurred writing, flower pressed into middle of book

One of the opportunities I had this year, as a newly minted PhD, was to chair a session (that is, run the session of paper presentation, introduce the speakers, hand out the best paper awards, ask questions if the audience is shy, and, most importantly, keep to time). It was a fun job and gave me a chance to engage with the speakers for some great papers! So, I thought I would recap some of the highlights about play and technology that piqued my interest during the conference.

Play (with/through/around technology) is one of the pillars of my research, as you can read in the blog recapping my own paper presentation at CHI. The other work I saw presented was a nice compliment to my own research. One paper, “Coding for Outdoor Play: a Coding Platform for Children to Invent and Enhance Outdoor Play Experiences,” was about an outdoor play activity that teaches children how to code. This game also had a social component with children working together to create game rules (which translated as ‘code’). Another paper, “Group Interactions in Location-Based Gaming: A Case Study of Raiding in Pokémon GO,” also looked at social aspects of play in outdoor spaces. I think there’s a lot of interesting avenues of this research at the intersection of play (indoor or outdoor, virtual or physical), technology, and social interactions.

A toddler holding up a toy camera

These papers give a us a road map forward in terms of understanding children’s play in the 21st Century. What most excites me about this work is I can see the opportunity here to be inclusive. Children with disabilities can benefit from augmenting environments with technology. I have seen this in my own work and I can see the natural extensions of some of the work above to move into disability spaces. In fact, Microsoft seems to also be moving a similar direction with the announcement of augmented reality Minecraft. This space is new and exciting, and I think with a little forethought and care we can make this inclusive for everyone.

A Place to Play


The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces

Preview: Play is an important part of childhood that is often inaccessible for children with disabilities. This work looks at how Autcraft, an online community for autistic children, uses different social media and games platforms to enable access to social play. First, the spaces the Autcraft community uses make the place that is Autcraft possible. Second, these spaces, though some of them are digital, are no more or less “real” than the physical spaces making up a schoolyard or playground.

Cross-posted on Medium.

Sunset in Minecraft.

Importance of Play

Social play is an important part of childhood. It is how children develop and practice their social skills. Children engage in a wide range of playful practice roles and test the boundaries of social rules. These playful interactions are vital not only for children to grow into competent, functioning adults, but also to discover who they are and what kind of adults they want to become.

Disabilities and Access to Play

Disability is created when a person is trying to interact with the world and are not accommodated by their environment. An example of this would be a child who wants to play on a playground, but they cannot roll their wheelchair into the space. Access and disability are inextricably linked. Access, in general, is not a given experience for any single individual. Disability is created in the moment that access is faulty or denied to a person. What this means is that disability is not created within a person.

Because a person’s body and their environment are constantly changing, disability is not happening all the time, but rather, a person is disabled by the context with which they are trying to engage. As disability scholar Tanya Titchkosky states, “While we all have bodies — bodies that we act, sense, feel, or move in and through — only some bodies, only some of the time and only in some places, are understood as disabled ones.” Access, therefore, is dynamic and ever shifting.

Accessibility signs in front of rough, grassy terrain.

For children with disabilities, including autistic children, access to play is often limited or of low quality. One way to help autistic children gain access to play and socialization is through online spaces, such as social media, games, and virtual worlds. This paper extends previous work in this area, by exploring the disabled experience and how that affects access to play.

Access is really only noticeable when it is not available and creates disability. The disabled body becomes the oppressed body, when they are denied access (advertently or inadvertently), not only in a social sense, but also in a literal, physical sense. Children who do not conform to “normal” and “normal play,” then, are not invited to the game. This is done both literally and through the making play objects that a disabled child cannot use.

Among other activities, individuals with disabilities use online spaces to socialize — empowering themselves to do what they may not be able to in the physical world. Online spaces have different ways of creating access from physical spaces. In this ethnographic work, I explore how one community uses the sense of place and the digital experience in Minecraft specifically to give autistic children access to play with their peers. In this sense, they are using Minecraft to mediate their play experience, just like a physical world playground mediates another kind of play experience. One type of mediated experience is not better (or less mediated) than another. Rather, these experiences, from face-to-face to text to avatars on a computer screen, are diverse kinds of experiences. Simply put, playing in Minecraft with friends is still social play, even though it might look different from playing in a physical playground.

For this work, I studied Autcraft. 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 this study, I have been conducting an on-going ethnography within the community (see my paper for details). This study included analysis of activity within the Minecraft server, forums, website, Twitter, Facebook group, YouTube, and Twitch.

The Different “Spaces” of Autcraft

In this work, I found the Autcraft community actively creates access to social play using a variety of social media and other technology. By looking at the entire constellation of social media in the Autcraft ecosystem, we can understand how community members are engaging in a variety of social play experiences.

Access to the Autcraft community happens through three layers of interconnected environments: physical, liminal, and virtual. The physical space includes computer hardware and the environment in which players access the computer. This would be things like a bedroom, home office, or computer lab in the library. The liminal space includes the installation and configuration of the software, as well as user authentication. Finally, the virtual space includes the various social media.

When combined, these spaces allow play to happen because the children have access to play in a context in which they “fit.” When educators, therapists, parents, and researchers privilege face-to-face interactions, they are, in effect, creating disability in children who cannot or will not play in that way. In the Autcraft community, members can recreate the playground in an environment that is more comfortable for them. Community members leverage technology to create a playground where children are most able to play. And, having done this, autistic children engage in social play of which people thought them incapable.

The Autcraft community has used a constellation of platforms to enable social play for autistic children. Here the Autcraft community is using the constellation of technological platforms to help create the sense of place. These platforms cross into physical, liminal, and virtual spaces, working together to create access to play. Here the Autcraft community have leveraged virtual worlds to their advantage — in essence, transforming the disabled play experience into an enabled one.

How someone interacts with others is meaningful, regardless whether that interaction is online or offline. For the autistic children of Autcraft, playing in online spaces is preferable to physical-world, face-to-face interactions. The Autcraft community has defied the conventions set out by many educators, parents, researchers, and therapists by creating a space that privileges digital engagements over physical-world ones. In doing so, they have made a playground that is more comfortable for many autistic children.

Children need a place to play. There are two things to consider: creating a sense of place and allowing for both the real and unreal in these places. Therapists, educators, parents, and researchers tend to privilege the physical realm over all others for mediating sociality. Members of the Autcraft community turn this notion on its head, instead privileging virtual interactions over physical ones. But further still, I have shown how all these spaces — physical, liminal, and virtual — must work together to make play possible. The spaces the Autcraft community uses make the place that is Autcraft possible. These spaces, though some of them are digital, are no more or less “real” than the physical spaces making up a schoolyard or playground. Ultimately, it the sense of place in Autcraft that gives children access to social play.

A Minecraft sheep with hearts around its head.

For more details about my methods and findings, please see my paper that has been accepted to CHI 2019 (to appear in May 2019). I am pleased to announce that this has received Honorable Mention (top 20% of all papers) Full citation and link to the pdf:

Kathryn E. Ringland. 2019. A Place to Play: The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces. In CHI 2019. [PDF]


Acknowledgements

I thank the members of Autcraft for the warm welcome to their community. Thank you to Chris Wolf, LouAnne Boyd, and Oliver Haimson and other members of LUCI for their feedback on various iterations of this work. Special thanks to Severn Ringland for his diligent editing and Kyle Lee for insights while writing this up. Shout out to my dissertation committee who helped me shape my thoughts: Gillian Hayes, Tom Boellstorff, Mimi Ito, and Aaron Trammell. I would also like to thank Robert and Barbara Kleist for their support, as well as the ARCS Foundation. 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. This work is covered by human subjects protocol #2014–1079 at the University of California, Irvine.

Players hanging out together in the Autcraft virtual world.

“Autsome”: Fostering an Autistic Identity in an Online Minecraft Community for Youth with Autism

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.

Because it’s a FAQ: What is the T32?

At Northwestern University, I am a NIH Ruth L. Kirschstein National Research Service Award Postdoctoral Fellow in the Multidisciplinary Training Program in Digital Mental Health, funded by the T32 Institutional Grant at the NIH. Yes, I realize that’s a lot of words, so I will take this blog post to break that down a little bit. This is especially foreign for HCI scholars, where postdocs are mostly funded under project grants.

What is the T?

In the medical sciences, such as Psychology, it seems that additional training after earning a PhD via a postdoc is much more the norm than it is in fields such as HCI (although with the academic job market being what it is, postdocs are just becoming more common across the board). NIH has a number of grants for scholars to apply to at the various stages of their careers. Briefly, these are:

  • Training Grants such as the K and T
  • R
  • P50

They even have a handy infographic of how this breaks down over a career.

https://www.nidcd.nih.gov/training/awards

Basically, the grants are set up such that when you graduate with your PhD, you have a T lined up to do for up to 3 years. Then, while working in the T, you are applying to your K. The K then gives additional mentorship and training years as you transition into independent faculty. Finally, as you advance in your career, you are well-set up to apply to larger grants, such as the R01.

The T32, specifically, are training grants that include research activities with mentors, as well as training in grant writing, publishing, and career planning. Teaching is not an expected part of early career training, under these programs.

So, what’s an HCI scholar doing in a T?

As a part of the Multidisciplinary Training Program in Digital Mental Health, I am on an interdisciplinary team of researchers from Psychology and Human-Computer Interaction (HCI). Not only am I working with two mentors, one from Psychology (David Mohr) and another from HCI (Madhu Reddy), but also with 3 other postdoc trainees.

Two of the postdocs are from fields in Behavioral Health and two of us are HCI-oriented. We are then able to cross-train each other in our respective disciplines. We are also working closely together on projects, often with a Behavioral Health lead and an HCI lead. This gives us a chance to learn enough of another discipline to work on these projects, have some publications in venues appropriate to each field, and widen our breadth of our research.

This training grant is also an opportunity to know our own discipline more deeply by having to teach outsiders some of the nuances and our language. This has been especially enlightening to compare publication cultures, with HCI being a field that values our conference papers as compared to Behavioral Health, which is journal-oriented.

This postdoc fellowship has been a unique experience for me, as an HCI scholar. I am learning how to work on interdisciplinary teams, find common ground, and bridge our scholarly work in order to meet our shared goals.

Rolling chairs in front of a blank projector screen.

Kate’s Paper Management Guide

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.

An open notebook on a dark wood desk with cursive writing in dark pen and a flower in the center of the book.

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.
An open notebook with cursive writing in the center and an open fountain pen with lid on top of the page.

What other things are important to remember about the writing process? Leave a comment below!

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