The Scottish Strategy for Autism Progress Report - Foundation Stage (2 Years)

The Microsegmentation of the Autism Spectrum

The Scottish Government are funding a research project looking at which early interventions work for people with autism and their cost-effectiveness. This builds on earlier work by Professor Knapp and is linked to Recommendation 5 of the Scottish Strategy for Autism.

The primary aim of this study is to identify the escapable costs of autism, that is, those which would not be incurred with early and appropriate interventions for individuals on the autism spectrum, and to provide the evidence base on which these can be applied to the context of the population of Scotland. It will do this by carrying out a micro-segmentation of the autism spectrum its co-occurring conditions and its associated issues. This will form a basis for providing a conceptual map of the autism spectrum.

The results will be mapped on to the most accurate demographic data that can be established for the population of Scotland. This will provide a rational basis for planning the services and supports that will be required to meet the needs arising.

The core research team consists of: Professor Tommy MacKay, Professor Martin Knapp, Professor Jim Boyle and Michael Connolly.

Progress to date:

• The first phase of the study was a scoping exercise which focused on the identification of research questions, the exploration of different models to serve as a basis for economic analysis, the identification of some key issues from the current literature and the preparations for a fieldwork study.
• This resulted in three main strands of research, the first two of which are approaching completion. Strand 1 comprises a systematic review and meta-analysis of prevalence studies on the autism spectrum. The purpose of this is to provide more finely calibrated prevalence data that will inform our understanding of the various segments and facilitate more accurate statistical modeling and economic analysis. Strand 2 comprises a systematic review and meta-analysis of IQ levels across the autism spectrum population, as a key factor moderating outcomes for individuals. Again, more accurate information on this variable is central to any study relating to economic impact.
• Analysis of the extensive literature relating to the autism spectrum, their comorbidities and their associated features indicates that the multi-faceted ways in which autism presents do not translate readily into practical impact on the actual quality of life and life trajectories of individuals on the spectrum, and of their needs for service provision. A means is required of looking beyond the many ways in which the population may be segmented to ask what that means in practical terms for individuals, their carers and their families.

The primary focus of Strand 3 therefore is a fieldwork exercise involving a survey of a sample of individuals on the autism spectrum in Scotland, with data on the sample provided both by the individuals themselves, where possible, and by their parents and carers. This is geared towards illuminating life trajectories across the lifespan in relation to the presentation of autism, its comorbidities and its associated features, together with the implications for service provision. This will be mapped on to the most accurate available demographic data that can be established for the population of Scotland in order to provide a rational basis for planning the services and supports that will be required to meet the needs arising, and for assessing economic impact.

The research is on-going and will conclude in 2014.

This contributes to goal 4 of the Foundation stage by illustrating that, in many cases, individuals with a diagnosis of ASD can have productive working lives and contribute to the economy.