Empowering autistic adults through their involvement in the development of a virtual world

Abstract

Purpose People with cognitive disabilities have a right to an inclusive society, and to have access to services and products that meet their specific needs. Participatory design (PD) represents a potentially effective way to ensure these rights, because users become influencers of the technological development and design process, are actively involved in the customization of that technology and develop a relationship with the designers/developers. Literature suggests that user involvement in technology development produces better products and has shown that this process offers users a voice and the process is also conducive to mutual learning between researchers and participants. This paper aims to discuss these issues. Design/methodology/approach Here the authors will present the development of a virtual world (VW) platform, having as a starting point a minimally viable initial version. This was followed by the creation of a networking framework to test each feature of the VW, which allowed connected users, most of whom on the autistic spectrum, to interact with each other in real time in the VW, and to see each other’s effects. Stress testing sessions were initiated with a mixed group of 15 users, 8 of whom with autism (7 male and 1 female). Ten of the participants were male and five were female (Figure 1). Findings Even though the platform is feature-complete, its code is still in development; features can be improved/expanded upon, which necessitates further testing. The most commonly flagged issues from the stress testing were requests for videos/text manuals, the camera controls and chat message errors. These were implemented/fixed or added to the feature roadmap. “Heavy avatar customization” was also suggested, which has conceptual merit, but is not a priority. Practical implications PD is an inclusive approach that addresses personal needs and preferences, matching up the person with the tools and environments to ensure equity and inclusion. The VW whose development is described in this paper has been used for communication skills training with autistic young adults. It could be used for other social, life, academic and vocational skills training. This type of training through VR/VW may help enhance the employment-related skills of neurodiverse populations (and thus empower independent living) and has the potential for broader implementation and wider access in terms of distance learning. Originality/value This paper adds to the rather limited literature on applying PD approaches in the development of products for people with neurodevelopmental disabilities. The authors will present such a process for the development of a VW with people with autism. Although literature suggests that user involvement produces better outcomes, adopting this approach is not straightforward. The paper will describe in detail not only the contribution the participants made in every phase but also the limitations of applying a PD approach with a neurodiverse population, in order for them to be equal partners in the process and be involved in a meaningful way.

Centrarse en las personas para facilitar abordajes de Diseño Participativo

“…Un primer tema a mencionar es el uso del término DP. Por ejemplo, en [Politis et al 2017] y [Politis et al 2019] se utiliza DP pero los autistas sólo participan del testeo de un producto, el cual no fue diseñado por ellos; estos trabajos llevan a la reflexión de qué tan participativos son en realidad, tal vez se clasifican más como un abordaje de DCP [Sanders, 2002].…”

“…Además, existen algunos trabajos que describen experiencias concretas de DP con adultos autistas. En [Politis et al 2017] y su evolución presentada en [Politis et al 2019] se propone una plataforma para que los adultos autistas entrenen habilidades de conversación; los mismos participan solo en las fases de testeo y retroalimentación. Si bien en estos trabajos se habla de DP en realidad los autistas no diseñan, sino que testean un producto ya diseñado.…”

“…En relación a los recursos usados en las experiencias descriptas, es de interés mencionar que solo se acondiciona en [Aslam 2018] el tamaño de los bloques de construcción, mientras que en [Kudryashov 2021] se resignifica el uso las técnicas de escenarios y mapa ganancia/dolor considerando a las personas autistas. En [Politis et al 2017], [Politis et al 2019], [Aslam 2018] y [Kudryashov 2021] se centran en la experiencia en sí y no brindan ninguna guía de cómo poner en práctica este tipo de abordaje; el framework propuesto en el presente trabajo busca aportar en este sentido, enunciando qué consideraciones deben tenerse en cuenta, por ejemplo, en relación a los recursos.…”

A New Framework for Examining Impact of Neurodiversity in Couples in Intimate Relationships

“…Nevertheless, these overlapping conditions can be addressed by technological advances. Participatory design for technology empowers the ND population by improving awareness that results in increased acceptance and reduced stigma (Politis et al, 2019). Technologies have the potential to address the challenges that ND users face.…”

A Process-Model for Minimizing Adverse Effects when Using Head Mounted Display-Based Virtual Reality for Individuals with Autism

“…(2) vulnerable participants are able to make betterinformed decisions about whether they choose to participate in a given research study and what to expect if they do agree to be involved. This again illustrates the importance of privileging the voices and perspectives of participants throughout the implementation process (Parsons and Cobb, 2013;Politis et al, 2019).…”