Service delivery and its implications for quality of life in Autism Spectrum Disorder

Abstract

Background. Previously published studies suggest that adults with autism spectrum disorder (ASD) and parents of ASD-diagnosed children experience, independently, poor quality of life (QoL) and poor service delivery. However, few extant studies investigate possible associations between service delivery experiences and QoL outcomes. Moreover, the existing body of knowledge on ASD-diagnosed individuals and ASD-affected families is incomplete because studies generally (1) emerge from high-income countries, ignoring the fact that residents of low- and middle-income countries (e.g., South Africa) often face substantial environmental, health, and infrastructural burdens, and (2) do not use comprehensive measures of QoL and service delivery, thus making it difficult to identify specific targets for improvement. Objectives. Across three independent studies, I undertook a comprehensive examination of service delivery experiences and QoL, and relations between them, in a sample of South African adults with ASD and parents of ASD-diagnosed children. Methods. Overall, the dissertation employed a mixed-methods design. In Study 1, which collected both quantitative and qualitative data, 15 adults with ASD completed a set of questionnaires measuring service delivery experiences, psychological distress, and QoL. Three of those individuals also completed one-on-one interviews detailing their service delivery experiences. In Study 2, which collected only quantitative data, 200 parents of children with ASD completed a similar set of questionnaires as did the Study 1 sample. In Study 3, which collected only qualitative data, 33 parents of children with ASD participated in focus-group interviews that detailed their service delivery experiences. Results. Across studies, data were consistent in indicating elevated levels of psychological distress, relatively poor QoL, and significant associations between the two. Quantitative and qualitative data suggested a marked lack of appropriate services. Problems included diagnostic delays, little ASD-specific training and poor ASD knowledge among healthcare professionals, high service-associated expenses, and a lack of (a) standard early interventions, (b) services and information available to young autistic adults post-school, (c) emotional support for parents, (d) ASD awareness in the community, (e) vocational/career training or supported employee training for adults with ASD, and (f) little workplace support for ASD-related sensory challenges. Finally, path analyses of the largest quantitative dataset indicated direct and indirect relations between child's ASD severity, familial SES, and parental service delivery experiences, and psychological distress; ultimately, these factors combined to account for a significant proportion of the variance in parental QoL. Conclusions. This novel and comprehensive investigation is the first to show that, in a LAMIC setting, (a) adults with ASD and parents of ASD-diagnosed children experience high levels of psychological distress, poor QoL, and shortfalls in almost all aspects of service delivery, and (b) there are interrelated pathways between child's ASD severity, family SES and service delivery experiences, parental psychological distress, and parental QoL. By understanding these constructs and the relations among them, while taking into account the additional challenges (e.g., resource limitations, socioeconomic stressors, high burden of disease) families and communities in LAMIC contexts might face, policymakers and service delivery providers can implement targeted support to optimise the daily functioning of ASD-diagnosed individuals and their families.