Beyond The ‘Untold’ Encountering Autism: Situated Insights On Ways To Enable Participation In Design

Cadamuro, Alessia (2020). Beyond The ‘Untold’ Encountering Autism: Situated Insights On Ways To Enable Participation In Design. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.00011d9e

Abstract

The number of people who experience autism is constantly increasing. In 2020, the Center for Disease Control and Prevention determined that, every year, approximately 1 out of 54 children is diagnosed with the autism spectrum disorder (ASD). In the last years, the number of research and studies dedicated to children with autism has increased; however, scarce attention was paid to research on adults with autism, particularly those on the severe end of the spectrum (low-functioning autism), who have limited verbal abilities and non-normative communication. Consequences of this include issues of social inclusion, lack of services, work opportunities, social and civil rights, to mention a few, which are not yet sufficiently explored nor implemented for this specific group of people.

This thesis employs Participatory Design to explore novel ways to engage with people on the autistic spectrum, in the attempt to understand what processes and participatory dynamics become enacted in acknowledging them as equal, valuable presences in the constitution of our collective existence and society. In particular, the research looks at processes and activities that can lead to a collaboration between designers and adults with severe autism and non-normative communication abilities, and their active participation within the research process.

By theoretically drawing from traditions of Feminist Theory and Participatory Design, this thesis considers one single case study, where collaboration with the participant is achieved by means of a situated approach to design research. My standpoint and philosophical positioning here are to acknowledge that there are multiple realities through which one can make sense of the world: this research envisions that each person constructs her or his own reality through their personal experiences. Such philosophical perspective aims at emphasising and valuing subjectivity, and the consequent, intrinsic partiality that constitute our human experience. Personalised and situated research objects are also used across the thesis as methodological elements, oriented to explore the potential of triggering participation, crossing the boundaries between different communication abilities and achieving mutual understanding between designer and participant.

The contribution to knowledge provided from this research is three fold: first, it provides new insights about the creation of research objects that result from a situated and
process-oriented approach to Participatory Design; second, it extends knowledge concerning design practices that involve the collaborative participation of people experiencing the severe 4 end of the autistic spectrum; third, it contributes to provide new narratives concerning peoplewith non-normative communication abilities and autism.

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