On March 13, 2019, the announcement that Dwarf fortress was coming to Stream and itch.io with graphics hit the web. Within 12 hours, the teaser trailer on YouTube amassed over 100,000 views. Dwarf Fortress is the “most incredible and impressive video game you’ve probably never played.” News spread across the internet that the creators, Zach and Tarn Adams, normally quite private about their personal lives, made the decision to release on commercial platforms to create a more stable source of revenue for themselves. Their reason? The need to be able to afford healthcare. Lack of access to affordable healthcare, and societal stigmas surrounding health, negatively impact people’s lives every day. With Zach and Tarn’s backing, we are writing a series of blog articles to help raise awareness about these issues.
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.
March 1st is the Disability Day of Mourning when we honor those with disabilities who are the victims of filicide.
Across the United States, approximately 12% of people have a disability. People with disabilities are more likely to live in poverty and become the victims of crimes. Every year, people with disabilities are murdered by their parents, family, or caregivers. 650 people with disabilities have lost their lives in this way over the last five years.
On March 1st each year, we hold the Disability Community Day of Mourning to honor and remember those who have been victims of filicide — both adults and children with disabilities who have been murdered by those closest to them.
While vigils are taking place across the globe, memorials are also occurring in online spaces as well. [short video of character in Minecraft to show how it works] In the virtual world of Minecraft, there are communities created specifically to be safe spaces for children and adults with disabilities. One parent in the Autcraft community has created a memorial commemorating the names of those lost to filicide. [a screenshot or two of the memorial]
While communities, like the Autcraft community, do a lot of outreach to educate others about anti-violence and anti-bullying and work to create inclusive spaces, more can be done to help marginalized individuals.
To find out how you can help visit the Autistic Self Advocacy Network website and download the anti-filicide toolkit.
Sullivan, P. M. (2009). Violence Exposure Among Children with Disabilities. Clinical Child and Family Psychology Review, 12(2), 196–216. https://link.springer.com/article/10.1007/s10567-009-0056-1
Ringland, K. E. (2019). “Autsome”: Fostering an Autistic Identity in an Online Minecraft Community for Youth with Autism. In iConference 2019 Proceedings.
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.
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.
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.)
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’m happy to report my paper, “A Place to Play: The (Dis)Abled Embodied Experience for Autistic Children in Online Spaces” has been accepted to be presented at CHI 2019 in Glasgow, UK. Below is a link to the PDF. Stay tuned for a blog about this article.
This week was CSCW 2018 – the conference about Computer Supported Collaborative Work. While I was there I attended workshops, panels, and paper presentations. I heard about a lot of great work happening in this space. I thought I would take a moment to recap some* of the things I heard about and learned while I was there. *Note: As my work pertains largely to Digital Mental Health, I’m going to focus on that for this short blog.
View from conference venue in Jersey City. New York City skyline and the Hudson River.
Day 1: Workshops
On the first day, I attended a workshop on Conducting Research with Stigmatized Populations. For more information, be sure to check out the website. The discussions we had were thought-provoking. We discussed the ethical and moral responsibilities of researchers who work with stigmatized populations. The range of work covered health, working with youth, working with refugees, international work, gender diversity, and more. The most intriguing part of the workshop – and most encouraging – was how our different research interests and communities intersected and aligned. Stay tuned for more about this workshop.
Day 2: Workshops
The second day, I attended the workshop on Social Issues in Personal Informatics. In this workshops we discussed the intersection of social computing and personal informatics. Concerns such as how to deal with the messiness and complexity of people at the same time people are engaged in self-tracking (and being tracked) behavior. Again, stay tuned for more details about this soon.
Presentations on Mental Health
I attended several interesting paper presentations related to mental health. These included a session of papers around social support and care, which I will highlight here. I highly recommending checking out the rest of the CSCW program for more awesome papers.
The first paper in this section that I wanted to highlight was work being done in substance use. This was also a hot topic in both the workshops that I attended. I particularly like that they are using participatory design methods – in a very careful way in order to protect the participants – to get at better ways to help people in recovery.
This next paper is one that explores a model of social support for individuals with mental health concerns. This work really highlights the complexity of trying to design for individuals in this community.
Finally, I wanted to highlight, this work being done in my own department here at Northwestern (before I arrived, of course). This work touches on how we as researchers interpret and understand content online. Sometimes we may see an image or a message and understand it to be one thing, when it is in fact another. This paper does a nice job of showing the relevance and importance of good, qualitative work.
There were some interesting health papers about fertility and pregnancy that I wanted to highlight. Even though they weren’t strictly about mental health, I found them compelling and easily related to a lot of the work I do.
I also appreciated the push to shift how medical services are rendered to women – shifting from fetus-centered healthcare to women-centered. This moves women to the center of their own care, away from simply being a vessel that grows a baby.
There was also a paper about risk to teens on the internet. The important take-away from this work is that the average teen will be exposed to risk on the internet, but instead of being overly-protective, we should be supporting their skill-building in coping. Our efforts should be focused on helping those teens who are more vulnerable to the risks (such as homeless youth or autistic teens).
Finally, I don’t think I could conclude a blog of my recap of CSCW without a plug for the paper I helped co-author. Chris Wolf, who was first author of this work, presented. In this paper, we discuss the complexity of single-sign-on in dating applications. As data flows between multiple platforms, users must make judgments about what data is being put on social media platforms and how these choices are made even more complex when access to one application requires feeding in data from another (e.g., must give Facebook access to Tinder).
There were many other great papers presented, as well as panels, posters, and more! Of course, my favorite part of attending these conferences is meeting other researchers and geeking out about how work. I hope to see you at CSCW 2019!
New York City skyline at night from conference venue.
Our lives are becoming increasingly intertwined with digital technology. People and technology work in tandem to create the context in which we spend our daily lived experiences. We use technology to connect to one another, both in the workplace and during our recreational time. Not only are we using technology to better connect to one another, but also to be understand ourselves.
In the field of Human-Computer Interaction, there is a whole sub-field of ubiquitous computing or the study of computing technology being embedded throughout our lives and society. The ubiquity of technology has been leveraged to help people keep track of their health, in the workplace, and has been commercially very successful for recreational use (Pokemon Go, anyone?).
Many of us carry around multiple devices on a daily basis.
An emerging field of research is Digital Mental Health, but what does that mean, exactly?
One area of interest is technology that supports (and/or treats) those looking to improve their mental health. This includes mental health apps for a mobile phone or website based care, for example. Technology will not necessarily replace traditional face-to-face therapies, but they could potentially augment them. A therapist might not always be readily available, but an app on a phone could be. Understanding the best way to design these apps is only beginning to be addressed by the research community.
Along the same lines is studying interventions that include technology in and for a clinical setting. This might include creating applications specific for a hospital setting or for out-patient groups. Another example might be building measures and treatments into a electronic medical record system. Users of these kinds of interventions would go beyond just thinking of a “patient” with mental health needs, but also doctors, nurses, and so on. One of the biggest hurdles here is the actual implementation of these tools – getting everyone in the system to actual adopt the technology, maintain it, and continue to use it so that it is effective.
Additionally, understanding the problems that might arise in digital spaces that lead to mental health problems can fall under the purview of “digital mental health.” This might include exploring the potential of “addictive” technology or spending too much time in front of screens. Research in this area might also look at perceptions of technology and how that might impact their use (or abandonment). Further, using some kinds of technology, such as social media, has the potential to be detrimental to a person’s mental health. In my own research, I’ve found that interacting in digital spaces can open up individuals to harassment and bullying.
Finally, understanding how people are already using technology to support their mental health. This includes how people already use technology as tools to support themselves and their mental healthcare needs. Individuals interested in improving their mental health may be using technology in a variety of ways. This includes personal tracking, using other apps, and connecting with others via social media.
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.
