A designer's approach: how can autistic adults with learning disabilities be involved in the design process?

Abstract

Autistic adults with limited speech and additional learning disabilities who are often excluded from design research are at the heart of this project. These are people whose perceptions, experiences and interactions with their surroundings are unique, but also are people who may not be able to communicate verbally their differences to the remaining 99% of the population. This, in combination with their distinctive cognitive profile, has resulted in a lack of studies involving people living with autism, and consequently their life experiences may neither be heard nor understood and remain largely unexplored. By reflecting upon the ongoing design collaboration between The Helen Hamlyn Centre for Design and the autism charity The Kingwood Trust, this paper reflects on the approach and methods used in three design studies. Particular attention is paid towards the careful selection, adaptation and development of collaborative design methods for autistic adults and their support staff to be involved. By working beyond the boundaries of a neurotypical culture, the project aims to support the greater goal of improving the everyday experiences of people living with autism by breaking down the barriers to participation.

Keywords::

• autism
• adults
• learning disabilities
• participatory design
• environment
• sensory preferences

Acknowledgements

The authors would like to thank Lady Hornby and Sue Osborn at the Kingwood Trust. They also thank Ted Powers, The Monument Trust, Colum Lowe (BEING) and members of the expert reference group for their ongoing support with the design collaboration. A special thanks goes to (for which it would have not been possible) to everyone that Kingwood Trust supports, their support staff and family members for their generosity of time, expertise and creative contributions to the research.

Notes

Consent has been granted for all photographs used within this paper. The real names of the participants have been replaced with pseudonyms to preserve anonymity. Throughout the paper, the term ‘neurotypical’ is used to describe people who are not autistic – a term widely used by the autism community. The term ‘autistic’ person is the preferred language of many people with autism (see Sinclair 1999). In this paper, we use this term as well as person-first language (such as ‘adults living with autism’) to respect the wishes of all people on the autistic spectrum.