What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries

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McConachie, H., Wilson, C., Mason, D., Garland, D., Parr, J. R., Rattazzi, A., Rodgers, J., Skevington, S., Uljarevic, M., & Magiati, I. (2019). What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries. Autism in Adulthood, 2(1), 4-12. https://doi.org/10.1089/aut.2019.0008

Publication date: 9 Oct 2019 Added to AutiHub: 18 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
10
Publication authors identified as autistic
1 / 10 (10.0%)
  1. Helen McConachie
  2. Colin Wilson
  3. David Mason *
  4. Deborah Garland
  5. Jeremy R. Parr
  1. Alexia Rattazzi
  2. Jacqui Rodgers
  3. Suzanne Skevington
  4. Mirko Uljarevic
  5. Iliana Magiati

Abstract

Relevant and valid measurement is crucial in determining whether interventions and supports have improved the quality of life (QoL) of autistic people. However, it is possible that researchers' and services' use of general population QoL tools may overlook issues of specific importance. To advance methodology, we conducted a preliminary exploration of the need and basis for cross-cultural development of additional autism-specific QoL questions. Nine consultation groups with autistic adults (n = 38) were held in Argentina, Australia, Singapore, and the United Kingdom to examine the items of the World Health Organization QoL questionnaire (WHOQOL-BREF) and the WHOQOL Disabilities add-on module. Each group discussion was transcribed and analyzed thematically to identify missing issues and nuances of particular significance to autistic people. Themes seen as important and particularly relevant to QoL of autistic people included a positive autistic identity, other people's lack of understanding of autism, sensory issues, and autistic people's contributions to society. There were notable similarities across sites indicating that creation of cross-cultural autism-specific items is likely to be possible; the themes identified could inform the focus of items for measurement of QoL. This project represents an initial step toward fuller international consultation, and subsequent development of an autism-specific module for addition to the core WHOQOL model. Lay summary Why was this project done? Quality of life (QoL) refers to how satisfied a person is with their life now, taking into account their experiences and the conditions in which they live. There are questionnaires for the general public to rate their QoL, but these may ask questions in ways that are not important or relevant for autistic people; for example, some autistic people have few or no friends, but are fine with this. Also questionnaires miss out topics such as sensory overload that impact on QoL for autistic people. What was the purpose? We wanted to try to understand whether the questions in the World Health Organization Questionnaire (WHOQOL-BREF for short), and in the optional add-on Disabilities questionnaire, were important and relevant to autistic people from different countries and cultures. We also wanted to find out whether autistic people thought there were other important topics missing from these questionnaires. What did the researchers do? We held 9 consultation groups about the WHO questionnaire items, with 38 autistic people in 4 countries: the United Kingdom, Singapore, Australia, and Argentina. Researchers, including members of the autism community, read the typed out discussions a number of times to find common themes, especially what was particularly relevant, or topics and experiences that were missing. First we analyzed the four United Kingdom groups, and then the other five groups. What did the researchers find? Autistic people we consulted thought that most of the existing items of the WHOQOL questionnaires were important. From the discussions, we found 13 themes that were identified as particularly relevant to QoL, including being positive about one's autistic identity, other people's (lack of) knowledge of autism, sensory issues, mental health difficulties, the nature of friendships, and supporting other people as carers or volunteers. What do these findings add to what was already known? The discussions from the four countries were quite similar. The items from the WHO QoL questionnaires were mostly viewed as important and relevant by autistic people, but a number of issues are missing, which seem different in autism and should be included in any improved measurement of QoL. What are potential weaknesses? The project was a first step in consultation about measuring autistic adults' QoL, involving only four countries, and all except one group conducted in English. Only one group included people with intellectual disability. How will these findings help autistic adults now or in the future? Having good QoL is central for everyone. Our consultation found that some topics highly relevant for autistic people are not included in QoL questionnaires developed for the general population. Our findings suggest that it will be both important and possible to develop a set of internationally appropriate items for autistic people to add to the existing WHO QoL questionnaires. This would allow researchers and health workers to measure accurately the QoL of autistic adults and to be able to judge how helpful supports and services are in improving QoL.

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: 2 Oct 2026 01:01.

Cited references
35
With a DOI
33
Without a DOI, from raw bibliography text
2
4 / 35 (11.4%) cited references include at least one author identified as autistic.
References with data to complete
0 / 35 (0.0%)
References with detected author names
35 / 35 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
2
References with raw author names still to review
0
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
117
From DOI or external metadata
117
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
57 / 117 (48.7%) names are linked to an author already present in AutiHub. 60 / 117 (51.3%) names are not yet linked.
Names linked to a person identified as autistic
5 / 117 (4.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 5 / 57 (8.8%). Distinct people identified as autistic: 4 / 104 (3.8%).
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