The aim of this series of blog posts is to give me the opportunity to reflect upon the initial stages of the CONNECT game project. I need to start the process of translating our practical game design collaboration into tangible research outcomes. In my practice-based film studies PhD, I was a non-autistic identifying practitioners/researcher, studying the ethical challenge of editing documentary interviews with autistic participants and turning them into animated documentaries. However, in this project my role is quite different because I am neither a participant nor a practitioner, as I don’t identify as autistic and I have no game design experience. This project positions me as a more conventional humanities and social science researcher, engaged in something akin to arts based participatory action research, responsible for developing and managing the collaborative method.
The CONNECT Project Group:
As of March 2025, I joined a neurodiverse, interdisciplinary, participatory research collective, known as CONNECT, which is based in the Maritime provinces of Canada. CONNECT, was extrapolated from the French title, CONtinuité des soiNs et des sErviCes pour les adultes autists, which translates to Continuity of Care and Services for Autistic Adults. The project was founded in 2017 by lead researcher, Dr. Caroline Jose, along with four autistic self-advocates (I’ll add their names here if they’d like to be mentioned). Jose is affiliated with the Vitalité Health Network and Université de Moncton. With Jose as my supervisor, we secured funding to start the game development, in addition to my own post-doctoral research fellowship, based at Université de Moncton.
With the exception of one researcher and the professional game design collaborators from Spandrel Interactive, each member of the CONNECT project group identifies as neurodivergent. While a majority of the group identify as autistic, we are neurodiverse in that there are some members who are non-autistic identifying, and there are others who use multiple labels. Including myself, I’ve heard members refer to being autistic, dyslexic, schizoaffective, attention deficit hyperactive, and having dissociative identities. My assumption is that a thorough survey would indicate more descriptive terms like this.
Our Project – Changing Perceptions of Autism Through a Video Game:
Under Caroline’s leadership, we received a Catalyst grant from the Canadian Institute of Research Health. Our proposal was submitted with two titles:
Formal Title: Addressing structural ableism in the digital world to improve health equity of real-world autistics: an autistic co-led, interdisciplinary and multisectoral approach to ethical representation in video game design
Lay Title: A game changing approach to autism de-stigmatization: addressing harmful stereotypes of autism in the video game industry by engaging autistics in the design process
We intend to raise additional funding to design and implement an impact study for measuring how the CONNECT game changes players attitudes towards autism and autistics. However, if we get funding for that, this will be the research focus of one of my colleagues. Therefore, I must consider the game’s impact, as beyond the scope of my research.
My research focus will be observing, analysing, and co-developing the participatory method for co-creating the CONNECT video game. This means:
- I will co-design and monitor our method of collaboration during the video game’s development and production.
- I will creatively contribute to the game development, drawing from my own perspectives, which are informed by my arts and humanities background in research by practice, participatory research, neurodiversity studies, autism representation studies, and non-fiction media ethics.
- I will conduct a qualitative study to gage how each contributing member is experiencing the collaborative method and the work in progress game.
We are working under the assumption that an effective way to produce a game that is capable of reducing autism-stigma in players is to ensure that:
- All creative decision-making during the game’s development will be made by, informed by, or ratified by the autistic contributors.
- While essentially fictional, the narrative content and game mechanics should be informed by the lived experiences and personal insights of the autistic contributors
It is my responsibility in the CONNECT video game project to ensure the coherence and efficacy of our collaborative method and maintain ethical standards. As such, I am very interested in finding out to what extent the autistic CONNECT members perceive the work-in-progress components of the game as authentically representing autistic lived experiences. Additionally, I’d like to develop a procedure for actioning feedback, e.g. if a CONNECT contributor identifies an inaccuracy or a problematic connotation in some aspect of the work in progress game, how can that be most efficiently fed back to the contracted game developers.
By the time we have produced the first public facing version of this game, something akin to a demo, I hope to be able to clearly articulate the method through which we achieved these results, so that other groups, with different concerns, have a framework for co-designing their own game as a means to confront oppression.
The CONNECT Game Project teams:
The project members are divided into three groups, with some members straddling multiple teams.
- The research team, consisting of professional researchers and administrators,
- The developer team, professional game designers and producers mostly based at the company Spandrel Interactive
- The creative team, a group of autistic self-advocates who have agreed to volunteer their time, ideas, and energy in order to lead the creative decision making in the game design process. Some creative team members have lots of game design experience, while others have none.
Positionality and group authorship:
An additional theoretical interest for me is understanding better the blurriness of collaborative authorship. This is important because the positionality of our group is crucial to the authenticity of the finished game and the research findings. We have about a dozen people contributing to a media artefact but, in theory, the creative decision making should be driven by the autistic subset in the group, the creative team, most of whom are inexperienced as game designers. What is currently not clear is how dogmatic should we be about these boundaries? Is there a qualitative difference between a creative decision made by a non-autistic contributor that was later ratified by the autistic members of the creative team, compared to a creative decision made by an autistic contributor? Is it practically possible for every creative decision to be made by members of the autistic creative team? Would being very strict about who can make a creative decision put the project momentum and progress of the game at risk? Would we put the anti-stigma credibility of the game at risk if we were very relaxed about who can make creative decisions?
It is important to note that, so far, our research design has been responsive. Partly as a reflection of our philosophical stance, partly as practical measure, we have been adapting our plans to unanticipated needs and team dynamics which started to emerge as soon as we stared. As such, the research team has not imposed a predetermined method for collaboration. As we collectively experiment in response to individual tasks, I have found myself taking an active role, rather than attempting neutral observation. I am an active member of the team, contributing my ideas and opinions. Although I am neurodivergent, because I don’t identify as autistic, I often feel a tension where I’m not sure if I should make space for other’s ideas by holding back my own or share them freely. What is clear to me, is that I am one of the least well position team members to author autism themed storylines or develop an autistic character. That said, having completed a PhD where I used the neurodiversity paradigm as a conceptual framework for producing ethical representations of autistic participants in animated documentaries, I have a lot of relevant knowledge, experience and skills. As such, I have found I feel qualified to contribute to our collaborative discussions and I sometimes weigh in on creative decision making.
The role of reflexivity:
The CONNECT project group will need to figure out what level of reflexivity to include in the game, or how to address this through meta textual artefacts, like press releases. We don’t yet know how important it will be for the player to be accurately informed about the nuances of group authorship. Presumably, part of the games anti stigma strategy will be to inform the player the game is a product of an autistic co-creation project, so it is likely we’ll need to be thoughtful about how the player will be reflexively addressed, either before or during or after game play. I look forwards to this topic being explored later in the process.
A Note on Terminology:
Throughout the lifespan of CONNECT research projects, Dr. Caroline Jose has focused on Patient Oriented Research or Patient Engagement, the equivalent of participatory research design in the social sciences. Partly due to my background in practice-based arts research, combined with my long running interests in anti-psychiatry, democratic psychiatry, and the neurodiversity paradigm, referring to the autistic colleagues as patients feels alien to me because of the inference of hierarchy. However, in order to maintain a degree of continuity with the CONNECT project’s previous research output and Jose’s widely celebrated Patient Engagement Tool Kit, which is aimed at drawing the medical establishment’s attention towards participatory research principles, I will use both terms in my writing, depending on the context.
Documentary Animation Discourse 