17 October, 2019
The economic burden of autism
Posted: 30 October, 2016
This month, #LoveIrishResearch celebrates ‘Research for a Healthy Life’, in collaboration with the Health Research Board. The Irish Research Council funds a number of early career-stage researchers working under the supervision of Health Research Board-funded principal investigators. Today we hear from Áine Roddy, an Irish Research Council postgraduate scholar in the Health Economics and Policy Analysis Centre at NUIG, and her supervisor Professor Ciarán O’Neill, who was awarded the Health Research Board Research Leader award in 2014. Áine’s thesis examines the economic costs of childhood disability in Ireland, with a particular focus on autism spectrum disorders.
My PhD research concentrates on the economic burden of autism spectrum disorders in Ireland for children and adolescents aged between 2-18 years of age. In the space of just three years, the prevalence of autism spectrum disorders has increased from 1 in every 100 school children in the Republic of Ireland, to 1 in every 65 school children (1.5%), which is now consistent with US and UK prevalence rates. Yet, the economics of autism spectrum disorders have remained a neglected area of research, despite increasing prevalence rates internationally and a recent study showing that autism costs the UK economy £32 billion per year (which is more than the combined cost of cancer, heart disease and strokes).
My research aims to provide an evidence-based analysis using a mixed methods approach to the economic burden of childhood autism spectrum disorders. This work has involved primary data collection using focus groups and individual interviews to allow parents of children and adolescents with autism spectrum disorders to express how the condition impacts on all aspects of family life. It has also informed the development of a national survey measuring the impact across a range of dimensions.
Through my research, I have highlighted some of the challenges faced by families, which are related to the availability of appropriate services and supports. The frustration and sense of isolation expressed by some parents as well as the emotional, physical and financial stresses provide valuable insights into the impact of living with autism spectrum disorders and offer a rich complement to the quantitative analyses of economic burden. The worries expressed by some parents regarding the future for their children as they become adults and their needs evolve provide compelling arguments for the importance of planning for future as well as current needs.
My work has been supported by the Irish Research Council and NUIG under the Hardiman Scholarship initiative. It has also received invaluable support from various autism organisations throughout the country and most importantly from the families of children and adolescents affected by autism spectrum disorders. I hope that this research will inform service provision by providing a better understanding of the needs and factors which underlie variations in these provisions.
Speaking about the project, Professor Ciarán O’Neill says ‘economics is sometimes called the study of choice. The mixed methods approach adopted here provides clearer insights into the difficult choices faced by parents in this context than a quantitative approach alone would; while challenging it has also been hugely rewarding’.
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