Article

Empowering people with Autism through their involvement in the development of a Virtual World

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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 Originality/value: This paper adds to the rather limited literature on applying Participatory Design approaches in the development of products for people with neurodevelopmental disabilities. We will present such a process for the development of a Virtual World 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 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. Design/methodology/approach: Here we will present the development of a Virtual World 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, eight of whom with autism (seven male and one female). Ten of the participants were male and five were female. 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. Implications: Participatory Design 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 Virtual World 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.

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... Firstly, it helps the research outcomes (whatever they may be) to cater to the actual needs of the end-users and makes the experience more acceptable and accessible for autistic people. Eleven studies (Adams et al., 2022;Adiani et al., 2022;Giaconi et al., 2021;Millen et al., 2011;Politis et al., 2019;Ramachandiran et al., 2015;Rutten et al., 2003;Schmidt & Glaser, 2021a, b;Smith et al., 2020) reported that involving autistic individuals in research allowed them to voice their opinions and become more self-aware, which in turn, led to them feeling empowered. ...
... In terms of the outcomes of participatory design approaches for autistic individuals, six out of the 20 included articles (Adams et al., 2022;Cobb et al., 2002;Giaconi et al., 2021;Halabi et al., 2017;Millen et al., 2011;Rutten et al., 2003) indicated that such involvement promoted a sense of enjoyment, belonging, ownership, and self-efficacy. Additionally, four articles Millen et al., 2011;Politis et al., 2019) demonstrated that involving autistic individuals facilitated the expression of their opinions and perspectives, a skill that can be challenging for this population. Moreover, one study (Adams et al., 2022) observed that by collaborating with autistic communities, researchers were able to decrease anxiety in autistic participants by ensuring appropriate levels of cognitive load in their activities. ...
... Of the 20 studies included in this review, three studies (Millen et al., 2011;Politis et al., 2019) involved only autistic people as co-designers and participants in their research, while eleven studies (Adiani et al., 2022;Amara et al., 2022;Cobb et al., 2002;Giaconi et al., 2021;Ghanouni et al. 2019;Lee, 2019;Politis et al., 2019;Rutten et al., 2003;Schmidt & Glaser, 2021a, b;Smith et al., 2020;Wang et al., 2022) involved multi-participant groups in the design of their studies, including autistic individuals, parents, teachers, clinicians, therapists, and other stakeholders. The remaining seven studies solely relied on input from stakeholders (e.g. ...
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The primary aim of this systematic review is to investigate the inclusion of autistic individuals in the design process of immersive technologies. This study follows the preferred reporting items for systematic reviews and meta-analyses standards for systematic literature reviews. To ensure the research questions and subsequent stages of the review incorporate pertinent parameters, the problem, interest, context framework has also been employed. Findings highlight that, while early proponents of immersive technology emphasized the importance of user involvement in design of new technology, immaturity of the technology often limited the implementation of direct user input to the design process. Nonetheless, analysis of the literature published between 2002–2022 identified 20 studies in which substantial influence of autistic individuals and stakeholders was found in the design process of immersive technologies. The roles of autistic individuals varied from active co-designers and co-creators to essential contributors in refining prototypes and providing critical feedback, ensuring the final products align with their needs and preferences. Results underscore the need to align research and design of immersive technologies more closely with the priorities and preferences of autistic individuals. Further is needed regarding actively involving autistic individuals in the design and implementation of immersive technology applications. On this basis, we maintain that more inclusive and effective deployment of immersive technologies is needed in order to ensure that resultant technologies are fit for purpose and address the actual needs of the autistic community.
... Customizable and adaptive learning experiences enable learners with special needs to engage more effectively with educational content. Participatory design (PD) approaches in developing VR platforms for individuals with autism, for example, have shown the potential to empower users by actively involving them in the customization process (Politis et al., 2019). ...
... Emphasizing inclusive design practices in developing AI-VR environments can help address accessibility challenges and promote social equity. Engaging users from diverse backgrounds in the design process ensures that the technologies are responsive to their needs and preferences (Politis et al., 2019). ...
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... Another type of collaboration related to games was studied by Politis et al. (2019), who analysed the effectiveness of the participatory design of virtual worlds to enhance social skills. The researchers propose an initial design and allow users to interact with each other in real time (mixed groups of people with ASD and neurotypicals) to reach an agreed final design. ...
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... In this manner, two key aspects are achieved: (1) we are ensuring our ethical obligation to our participants (i.e., clear and concise communication); and (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). ...
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People with autism experience profound and pervasive difficulties in the social domain. Attempts to teach social behaviours tend to adopt either a behavioural or a 'theory of mind' (ToM) approach. The beneficial aspects and limitations of both paradigms are summarized before an examination of how virtual reality technology may offer a way to combine the strengths from both approaches. This is not an exhaustive review of the literature; rather, the papers are chosen as representative of the current understanding within each broad topic. Web of Science ISI, EMBASE and PsycInfo were searched for relevant articles. Behavioural and ToM approaches to social skills training achieve some success in improving specific skills or understanding. However, the failure to generalize learned behaviours to novel environments, and the unwieldy nature of some behavioural methodologies, means that there is a need for a training package that is easy to administer and successful in promoting learning across contexts. Virtual reality technology may be an ideal tool for allowing participants to practise behaviours in role-play situations, whilst also providing a safe environment for rule learning and repetition of tasks. Role-play within virtual environments could promote the mental simulation of social events, potentially allowing a greater insight into minds. Practice of behaviours, both within and across contexts, could also encourage a more flexible approach to social problem solving. Virtual environments offer a new and exciting perspective on social skills training for people with autistic spectrum disorders.
There's Sanity Returning
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BusinessWeek. Steve Jobs: `There's Sanity Returning' (1998).
Generation Touch: Empathetic Education, and Social Inclusion: challenges to the European Commission's Horizon 2020 Programme
  • L Goodman
Goodman, L. (2016). "Generation Touch: Empathetic Education, and Social Inclusion: challenges to the European Commission's Horizon 2020 Programme", Keynote at the International Step by Step Association (ISSA) Conference, Vilnius, Lithuania, 11-13 October.
Case Study | Should You Listen to the Customer?
Harvard Business Review. Case Study | Should You Listen to the Customer? (2012) http://magsreview.com/harvard-business-review/harvard-business-review-september-1-2012/1873-case-study-should-you-listen-to-the-customer.html Accessed 1 November 2018.