Residential Care for Older Autistic Adults: Insights from Three Multiexpert Summits
Catherine J Crompton, Cos Michael, Michael E. Dawson, Sue Fletcher‐Watson
Abstract
As autistic people get older, they may suffer increasingly with poor health and as a result may transition to residential care. Very little is known about the support needs of older autistic adults in general, or their specific needs within residential care services. As such, it is impossible to determine whether existing residential services are meeting the needs of older autistic adults. A first step to resolving this issue is to determine what are the priority topics for research and practice in this area. A multidisciplinary expert group was formed, and three meetings were held in 2018. Group members included older autistic adults, the immediate family members of older autistic adults (siblings and children), service providers, clinicians, and researchers based in the United Kingdom. Their aim was to progress the research and practice agenda in residential care for older autistic adults by identifying priority topics for research and recommendations for practice and policy. Ten key topics were identified, including supporting transitions to residential care, training for staff, and supporting physical health. This article summarizes the discussions around these topics and highlights areas for future research and practice development. Lay Summary Why is this topic important? We know very little about the support needs of older autistic adults, or their specific needs if they have to enter residential care. We do not know whether existing residential services are providing autism-appropriate support. What is the purpose of this article? To identify priority topics for future research and practice development relating to older autistic adults in residential care. What did the researchers do? We formed an expert group, including older autistic people, family members, service providers, clinicians, and researchers, to discuss how residential care is run now and what research and recommendations are needed to adjust residential care to meet autistic needs. What did the expert group recommend? We identified 10 topics, where important adjustments for the needs of autistic older people may need to be made in existing residential care. These are as follows: managing transitions into residential care; autism training for residential care staff; recognizing and respecting autistic differences and understanding autistic well-being; supporting physical health; the sensory environment and sensory processing; design principles; creating community and belonging; autonomy and choice; advocacy; and evaluating care quality. We hope that identifying these 10 priority topics will act as a starting point for researchers to pursue these important questions. What are potential weaknesses in these recommendations? Although we included representatives from many areas of the autism community, we were not able to directly include any autistic people currently living in residential care, although we hope that through this work their experiences will be centered in future research. In addition, we did not include the direct perspectives of autistic adults with high support needs (e.g., intellectual disability and communication difficulties) although these perspectives were conveyed by proxy representatives such as siblings and specialist service providers. How will these recommendations help autistic adults now or in the future? We believe these insights can guide further research with residential care service providers, determining how to provide for the increasing number of older autistic people living in residential care homes. The well-being of these residents must be equivalent to the standard for their nonautistic peer group.