Home tailoring: independent living on the autism spectrum

ABSTRACT

Many autistic adults tend to live with their parents rather than independently. Few studies exist about what independent living means from their perspective and what role the built environment plays therein. Our study reports on the lived experience of two autistic men living in two different residential settings. Data were collected through conducting in-depth interviews, photographing, drawing and following social media sites during one year, and were analyzed thematically. Findings suggest that independent living involves negotiating for autonomy, (seeking) company of other people, needing guidance, and home tailoring. While existing guidelines on residential design for autism tend to focus on sensory and perceptual aspects, our study draws attention to other facets of how spaces are experienced, namely what spaces afford and mean. Further research is needed to understand how residential design can leave room for autistic adults to tailor their homes to their own needs, and through that support their independent living.

KEYWORDS:

• Autism
• built environment
• independent living
• home
• housing
• lived experience
• residential design

Acknowledgement

We would like to express our gratitude to the participants: Mathieu, Thomas, Thomas’ parents, and the coach for their generous contribution of time and willingness to share their opinions and experiences. Special thanks also go to Dr. Pleuntje Jellema, Dr. Natalia Perez Liebergesell, and Dr. Piet Tutenel from KU Leuven for their invaluable discussions during the analysis and writing process.

Disclosure statement

No potential conflict of interest was reported by the authors.

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Notes

1. In disability studies, a conceptual distinction is made between impairment (a characteristic of an individual) and disability (the effect resulting from the interaction between the individual and the environment). Given that our study focuses on the role of the (built) environment, we prefer the term “impairment” when referring to the characteristics of the individual.

2. To avoid participants’ identification, their names and those of their setting were pseudonymized. However, the illustrations may allow people familiar with the settings to recognize them.

3. The name of the social media group is hidden to protect the participant’s privacy.

4. A support staff is a professional care provider, Flemish word is woonbegeleider, meaning guide, or counselor.

5. Although Asperger is no longer used as an official diagnosis term, we retain this term as Mathieu used it.

6. Support staff came several times per week to support Thomas according to his needs: offering guidance in personal and housing care, accompanying him to the supermarket, paying bills.

Additional information

Funding

The work was supported by the Vietnam International Education Department [911].

Notes on contributors

Phuong Nguyen

Phuong Nguyen is an architect and a lecturer in architecture at Faculty of Architecture and Planning, Hanoi University of Civil Engineering (Vietnam). She obtained her PhD in the Research[x]Design group at the Department of Architecture, KU Leuven (Belgium). Her PhD research project is about “Home Tailoring: The Built Environment in Experiences of Independent Living on the Spectrum”. Currently, Phuong is engaged in postdoctoral research at Research[x]Design group KU Leuven, investigating the experiences of autistic individuals to comprehend the role of the built environment in (un)supportive workplaces.

Viviana d’Auria

Viviana d’Auria is Associate Professor in International Urbanism at the Department of Architecture, KU Leuven (Belgium) and has been NWO Rubicon research fellow at the Department of Geography, Planning and International Development Studies, University of Amsterdam (The Netherlands). She teaches core courses at the Master of Architecture and Human Settlements and Master of Urbanism and Strategic Planning, (Dept. of Architecture, KU Leuven). Her research focuses on the interplay between social inclusion/exclusion and spatial conditions in a variety of contexts. Exploring ‘practised’ and ‘lived-in’ architecture is an integral part of her work within a more general interest in the trans-cultural construction of cities and their contested spaces.

Ann Heylighen

Ann Heylighen is a design researcher with a background in architectural engineering. As a professor of design studies at the KU Leuven, she co-chairs Research[x]Design, a research team at the interface of design research and social sciences/humanities. She studies design practices in architecture and related design domains, and explores how the experience of people of various abilities, ages and perspectives may expand prevailing ways of understanding and designing space. Ann teaches design theory, professional ethics, and inclusive design. She is a Fellow of the Design Research Society, and Editorial Board Member of Codesign and of Building Research and Information.