Quality of Life in Autism: A Systematic Literature Review

Background: ASD is a life-long neurodevelopmental disorder with substantial impact on various aspects of daily-life functioning. However, the first articles evaluating quality of life in individuals with ASD were only published quite recently. Since then, the interest has grown tremendously, yielding highly diverse publications, both in terms of addressed research questions and ASD characteristics, but also in terms of quality of life measurements and results. Several researchers have reviewed quality of life publications in autistic individuals. The number of articles included in each of those previous reviews varied between 11 and 16.

Objectives: We wanted to perform an extensive systematic review on quality of life in individuals with ASD, aiming to provide responses on the following questions: (1) Do autistic individuals have a lower quality of life?; (2) Which factors are associated with a lower (or higher) quality of life in individuals with ASD?; (3) How can we measure quality of life in those with ASD?.

Methods: This literature review consisted of multiple stages with a final set of 48 included publications: (1) the literature search, (2) screening all publications using a set of inclusion and exclusion criteria, and (3) extraction and coding of the relevant data.

Results: Quality of life appeared lower in individuals with ASD compared to normative samples, typically developing controls, but also in comparison to a broad range of clinical control populations. More problem behavior, higher ASD severity and lower adaptive functioning were clearly associated with poorer quality of life, but evidence on the effects of age and gender was highly mixed. Intelligence did not correlate with quality of life. A broad range of measurements was used, but mostly questionnaires were administered from autistic individuals themselves, or a proxy. Parents or other proxies reported lower quality of life compared to the individuals with ASD themselves, but moderate intra-class correlations were found between proxy- and self-reports.

Conclusions: Quality of life gained increasing importance, both as treatment goal and in the context of treatment evaluation. The concept has proven its value in other clinical populations, in shifting the attention from problems to individuals’ strengths and in emphasizing their subjective perspectives. This extensive literature review has demonstrated the relevance in the context of individuals with ASD, but also pointed towards some pitfalls. An ASD-specific QoL instrument has not been developed yet, and the currently used measurements include a highly diverse set of quality of life domains.