Abstract
The purpose of this letter to the editors is to highlight to the readership of Autism the recommended use of the Autism Quality of Life measure for research with autistic adults. The Autism Quality of Life was developed for use alongside the WHOQoL-BREF and WHO Disabilities module. The letter raises some concerns about the use of the Autism Quality of Life as a stand-alone measure in a recent study by Caron et al. published in Autism.
I am contacting you regarding a recent publication in Autism (Caron et al., 2021). This study compared French-speaking autistic adults from France and Québec, Canada. The authors conclude that their data indicate that the perception of quality of life (QoL) and its determining factors were different for the autistic adults living in each country. The autistic people living in Québec reported superior QoL, and some predictors of QoL were also different in each group. The primary outcome measure utilised in this study is the Autism Quality of Life measure (ASQoL; McConachie et al., 2018). The development and validation of the ASQoL were undertaken in the context of the completion of both the WHOQoL-BREF and the WHO Disabilities module. It essential to use the ASQoL alongside both of these additional measures; otherwise, important issues, including those pertaining to inclusion, discrimination and autonomy, are not captured. The ASQoL webpage very clearly states that ASQoL is not a stand-alone measure but rather a module that has been designed as an ‘add-on’ set of nine items, to be used alongside the WHOQoL-BREF and the WHO Disabilities module (https://research.ncl.ac.uk/neurodisability/leafletsandmeasures/autismqualityoflifemeasure/).
We corresponded with Dr. Courcy when they sought permission to translate the ASQoL into French for use in their work and we very clearly stated at that time that the measure was to be used alongside the WHOQoL-BREF and the WHO Disabilities module, a requirement that the authors acknowledged and agreed to. We are concerned to read the attached manuscript reporting the ASQoL as a stand-alone measure. We are particularly concerned that this may been seen to set a precedent that the tool is a comprehensive and valid measure of QoL for autistic people. This was not our intention and we would caution other researchers against using the ASQoL in this way.
Yours faithfully,
Professor Jacqui Rodgers, Newcastle University, on behalf of all co-authors of the ASQoL
Footnotes
Funding
The author(s) received no financial support for the research, authorship and/or publication of this article.