Elsevier

Research in Developmental Disabilities

Volume 28, Issue 1, January–February 2007, Pages 94-104
Research in Developmental Disabilities

Cost-impact of young adults with high-functioning autistic spectrum disorder

https://doi.org/10.1016/j.ridd.2005.11.002Get rights and content

Abstract

There is a general lack of information about the economic impact of autistic spectrum disorder (ASD), particularly regarding adults and those with high-functioning ASD. In this study, the societal economic consequences of ASD were investigated using a sample of young high-functioning adults in need of employment support. A methodology for the collection of cost information was developed and information about how to avoid obstacles in the collection process was obtained. Today, many people with ASD who would be able to function in open employment do not get this opportunity. This study demonstrated that ASD results in high costs and indicates that a lack of supported employment programmes for people with ASD may have negative resource consequences for the economy. The study also contributes towards a methodology of economically evaluating supported employment programs as well as other interventions for people with high-functioning ASD.

Introduction

Economics is the study of scarcity. Where expressed wants or identified needs exceed available resources, scarcity exists. In the context of such a scarcity, careful decisions need to be made so as to get the best out of available resources. This goal requires evaluative studies including information about service use, the consequences for users, their families and others and the associated costs. Without such information, there is a strong likelihood that resources will be less than optimally deployed.

As a multi-agency responsibility, autistic spectrum disorder (ASD) leads to a wide range of different needs that change during one's lifetime. Those characteristics put certain demands on the collection of cost information. To be able to evaluate different effects of interventions that target different people in the spectrum depending on age and disabilities, knowledge about the main cost drivers for different groups in the spectrum would be of great assistance. This information enables evaluators to ‘micro-cost’ some services while ‘gross-costing’ others and neglecting others. If current or lifetime costs can be accurately calculated, and be related to life course outcomes, there is a useful basis from which to subsequently discuss the effectiveness of different interventions.

Some groups in our society, such as those with ASD, can experience enormous difficulties in both getting a job and keeping it. But this should not be the case. Researchers have shown that people with high-functioning ASD with the right support can be competitively employed and thereby better integrate with the rest of society (Howlin & Mawhood, 1999; Keel, Mesibov, & Woods, 1997). There are also reasons to believe that productivity losses and the need for day care activities would decrease when a person with autistic spectrum disorder gets into employment. Employment might also decrease the need for professional and informal living support and there is the possibility that the high prevalence of psychiatric morbidity, reported by Tantam (2003) and others, could be reduced as a consequence of employment. All these consequences might, if true, lead to a lower overall cost for society.

However, there is very limited information about the economic consequences of supported employment programmes for people with ASD and we have only found economic evaluations focusing on the consequences for the Exchequer (Alcock & Howlin, 2003; Howlin & Mawhood, 1999). Moreover, economic evaluations of supported employment programmes for people with high-functioning ASD might prove to be particularly interesting as Cimera (1998) has shown that these programmes are more beneficial for those with high IQs. Although sound economic evaluations would require knowledge about the main cost-drivers for people with high-functioning ASD, who should be considered to attend such programmes has gone unstudied. This research is therefore aimed to investigate the cost consequences of ASD for people in need of supported employment and to learn more about the economic impact of high-functioning ASD in general. This goal includes investigating service utilisation patterns among young adults with high-functioning ASD, estimating their associated costs and examining productivity losses and the burden for informal carers from a societal perspective. The study result would also provide information about the distribution of cost consequences onto different agencies in the society.

Section snippets

Setting and subjects

Between the years of 2000 and 2003 a project was conducted in four communities (Vänersborg, Trollhättan, Uddevalla and Lysekil) in western Sweden. The project's overall aim was to improve the situation for people with autistic spectrum disorder by increasing knowledge about the disability among authorities and to be able to respond positively in supporting people with ASD who are looking for employment. The project offered: adapted education for authorities; qualified supervision; networking

Baseline

In the first year, information was collected for 19 individuals who had been in contact with the project, mainly through the social groups that were arranged. These 19 individuals were all interviewed using the CSRI.

Discussion

The 19 young adults with high-functioning autistic spectrum disorder, mostly Asperger syndrome, had an average annual cost for community support of €7154. Although it was not possible to conduct formal statistical tests because of the small sample, it appears that community costs change considerably over time depending on the individuals’ current occupation and supply of services. For this sample of users, there might be reasons to predict increased need for support in the future when their

Acknowledgement

We extend sincere thanks to the Swedish Public Inheritance Fund for the funding of this study.

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