Transforming Home: parents’ experiences of caring for children on the autism spectrum in Tasmania, Australia

Abstract

As the private dwelling becomes the preferred site of care for individuals with a variety of complex needs, there has been a burgeoning interest in housing adaptations and the impact on experiences of home. The majority of studies are situated within the contexts of ageing, the disabled body and chronic medical conditions. In this paper, we present the results of a self-directed photography pilot study exploring the experience of carers of children on the autism spectrum in Tasmania, Australia. The findings highlight the multifarious and exacting negotiations required to meet the complex and idiosyncratic needs of children with autism and those of other family members. A key theme is a heightened need for containment enacted through micro-scale modifications to the physical fabric and spatial organization of the dwelling and through less tangible but pervasive practices and routines. The multiple constraints and extensive impact on families emphasize an urgent need for targeted research, policy development and support for this population.

Keywords:

• Autism
• home
• care
• housing modifications

Acknowledgements

The authors would like to thank all of the participants who contributed to this study. We would also like to thank Mary Brake from the Department of Education for her invaluable input into this research. Finally, we would like to thank the three anonymous reviewers for their insightful comments on an earlier draft of this paper.