Co-Creating the Autistic Satisfaction with Care Holistic Interview to Examine the Experiences of Older Autistic Adults in Residential Care

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Crompton, C. J., Michael, C., & Fletcher-Watson, S. (2019). Co-Creating the Autistic Satisfaction with Care Holistic Interview to Examine the Experiences of Older Autistic Adults in Residential Care. Autism in Adulthood, 2(1), 77-86. https://doi.org/10.1089/aut.2019.0033

Publication date: 12 Dec 2019 Added to AutiHub: 9 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Catherine J. Crompton
  2. Cos Michael *
  3. Sue Fletcher-Watson

Abstract

As in the general population, autistic adults may need residential care in their old age. Little is known about the needs of older autistic adults in residential care, and how to support them within these services. Care homes for older people play a central role in their social, physical, and psychological well-being, and it is important to identify and understand what factors can contribute to this for autistic adults, who may have specific and unidentified needs. A researcher and two experts via lived experience identified key topics for inclusion in the first round of an abbreviated Delphi study. Twenty-six experts in autism, aging, and residential care completed the two-round Delphi study, which involved identifying and prioritizing key areas of interest, and generating and providing feedback on interview content. This co-creation process gave rise to the Autistic Satisfaction with Care Holistic Interview (ASCHI), a four-part interview schedule designed to be used with autistic adults in residential care homes. The ASCHI covers topics identified as being important to autistic adults living in residential care, including social time with others, daily routine, activities, environment, independence, advocacy, physical health, and well-being. The ASCHI is an open access tool that can be used in future studies to explore the experiences of older autistic adults in residential care and help shape future research, practice, and policy. Lay summary Why was this study done? As in the general population, autistic adults may need residential care in their old age. Little is known about the needs of older autistic adults in residential care, and how to support them within these services. Care homes for older people play a central role in their social, physical, and psychological well-being, and it is important to identify and understand what factors can contribute to this for autistic adults, who may have specific and unidentified needs. What was the purpose of this study? To learn more about the experiences of older autistic adults who live in residential care, we co-created an interview schedule called the Autistic Satisfaction with Care Holistic Interview (ASCHI). What did the researchers do? We worked with autistic people, their families and allies, researchers, service providers, and clinicians to co-create this interview. This involved finding out about what their priorities were in relation to residential care for older adults, then finding out which questions mattered to them most, and which questions were most accessible to be used in an interview with autistic adults. What were the results of the study? The authors created the ASCHI tool, which can be used in future research to find out more about what residential care is like for older autistic adults, and which areas of services are not meeting their needs. This can, in turn, be used to inform policy and practice in residential care services, improving the quality of life of older autistic adults. What do these findings add to what was already known? Currently, there are no research tools to find out what residential care is like for older autistic adults. We have worked with the autism community to create a new tool so that future researchers can learn more about older autistic adults' experiences of residential care. What are potential weaknesses in the study? Due to limited resources, we have not been able to pilot test the interview with older autistic adults in residential care yet; however, we have published the interview under an open access license to allow researchers in the future to make the adaptations needed when using the interview. Also, the interview has been designed for autistic adults who use verbal language and are able to consent to taking part in research, and so its design limits participation to this subgroup of autistic people. How will these findings help autistic adults now or in the future? This study provides a new tool to help researchers learn about what residential care is like for autistic people. This means that in the future, we will be able to understand what areas of support need more research and development to improve the care and lives of older autistic people.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 18:19.

Cited references
41
With a DOI
33
Without a DOI, from raw bibliography text
8
2 / 41 (4.9%) cited references include at least one author identified as autistic.
References with data to complete
4 / 41 (9.8%)
References with detected author names
37 / 41 (90.2%)
Without detected author names
4
Without a structured title
3
Without a stable identifier
8
References with raw author names still to review
3
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
129
From DOI or external metadata
129
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
19 / 129 (14.7%) names are linked to an author already present in AutiHub. 110 / 129 (85.3%) names are not yet linked.
Names linked to a person identified as autistic
2 / 129 (1.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 2 / 19 (10.5%). Distinct people identified as autistic: 2 / 126 (1.6%).
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