The microsegmentation of the autism spectrum: research project

2 Introduction

2.1 The Microsegmentation Project was funded by the Scottish Government through Scottish Autism to take forward key recommendations of the Scottish Strategy for Autism (Scottish Government, 2011).

2.2 The research team is as follows: at the University of Strathclyde – Professor Tommy MacKay (Principal Investigator), Professor James Boyle and Michael Connolly, Research Assistant; at the London School of Economics – Professor Martin Knapp, Valentina Iemmi, Research Fellow, and Amritpal Rehill, Research Officer.

2.3 Interim reports were submitted on 31 December 2012 and on 12 August 2014 and an initial draft of the final report on 7 November 2016. In addition, the following overviews and updates have been provided: a presentation to the Scottish Government’s ASD Reference Group on 22 July 2013; a journal article in Good Autism Practice in October 2013 (MacKay, Boyle, Knapp, & Connolly, 2013); keynote presentations to the Action on Autism Research Seminar on 10 June 2014, to the Action on Autism Research National Conference on 7 November 2014, to the Board of Scottish Autism on 4 October 2016 and to the 5 ^th Annual Strategy Conference on 16 January 2017; and in a keynote address and oral presentations and posters at the XI Autism Europe International Congress from 16-18 September 2016.

2.4 The project arose with particular reference to Recommendation 5 in the Scottish Autism Strategy: ‘It is recommended that Knapp’s work on the economic costs of autism is analysed and applied to the Scottish context to inform strategy and planning on what interventions lead to positive impacts both for individuals and for the economy as a whole. Particular attention should be paid to his “invest to save” assertion that if 4% of those with Asperger’s were given appropriate support into work this would ultimately mean that those individuals may not require services and could contribute to the economy.’ In order to provide a basis for this, it was essential that more accurate and more detailed economic costs should be formulated than were currently available, and that these should relate specifically to the ASD population of Scotland.

2.5 The study was also relevant to several other recommendations in the Strategy. These include the following. Recommendation 7: ‘It is recommended that the ASD Reference Group commissions research to examine and compare the outcomes in relation to quality of life for those who are supported by autism service providers and individuals who access generic provision and that relevant findings are used to inform revised guidance for commissioners of services for people with ASD’. Recommendation 10: ‘It is recommended that agencies and services develop a menu of interventions including advice, therapeutic interventions and counselling for children, young people and adults with an ASD, that are appropriate and flexible to individual need. This menu should identify advice and support that is immediately available, and set out the referral and assessment process for all other services and interventions’. Recommendation 11: ‘It is recommended that consideration is given to the specific supports needed for the more able individuals with ASD’. Recommendation 17: ‘It is recommended that the Training Sub-Group of the main Reference Group is reconstituted and strengthened by the inclusion of an SCLD representative to undertake an audit of existing provision and to take evidence from grass roots trainers with a view to recognising strengths and gaps as well as identifying the means by which to further improve what is on offer’.

2.6 Aspects of all of these recommendations are ultimately dependent on the availability of accurate economic data for ASD applied specifically to the Scottish context. The study aimed to achieve this by generating costs on the basis of developing more accurate information on the key factors determining cost variation. A primary purpose of doing so was to provide a reliable foundation for identifying those costs of autism which may be ‘escapable’, that is, those which would not be incurred with early and appropriate interventions for individuals on the spectrum.

2.7 The above aim was taken forward by carrying out a ‘microsegmentation’ of the autism spectrum, its co-occurring conditions ^[1] and its associated problems, so that a conceptual map of the spectrum might be constructed. Each segment was associated with a range of possible life outcomes, illustrating the types of issues and challenges likely to be faced by the individuals concerned.

2.8 The first phase of the study comprised the identification of research questions and the carrying out of a scoping exercise focussing on the status of current research on ASD and economic impact, the issues arising in relation to the lack of reliable prevalence data, the issues associated with autism and intellectual disability, the concept of additive risk factors, 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.

2.9 A principal factor in determining the complexity of the overall project was not only the complex nature of the issues involved but the vast extent of the literature that has had to be considered. In addition to literature relevant to economic analysis, this included the evidence base on co-occurring conditions, other clinical features, prevalence, intellectual ability, impact and outcomes, interventions and service needs. Analysis of this extensive literature indicated 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 was 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. For these reasons a fieldwork exercise involving a survey of a wide sample of individuals on the autism spectrum in Scotland was considered essential, with data on the sample provided both by the individuals themselves, where possible, and by parents, carers, close friends or volunteers working with people with ASD.

2.10 There are three main studies within the microsegmentation project. Study 1 comprises a systematic review and meta-analysis of English-language studies of prevalence of the autism spectrum from across the world. The purpose of this is to provide more methodologically robust prevalence data to inform more accurate economic analysis. In terms of demographic mapping, all relevant and available Scottish data pertaining to the prevalence of ASD were examined and compared with all data gathered for the study from other sources. Study 2 comprises a systematic review and meta-analysis of intellectual ability levels across the autism spectrum population, as a key factor moderating outcomes for individuals. Again, as noted by Knapp, Romeo and Beecham (2009), more accurate information on this variable is central to any study relating to economic impact. Study 3 comprises a fieldwork exercise conducted by way of a detailed and extensive Scottish Autism Survey in order to generate a unique dataset of information pertaining directly to the ASD population of Scotland. This was geared towards illuminating life trajectories across the lifespan in relation to the presentation of autism, its co-occurring conditions and its associated features, together with the implications for service provision. This was then 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.

2.11 The research reported here is not only of central relevance to Government priorities in terms of economic planning and funding but it is also central to the expressed interests and priorities of the autism community. Pellicano, Dinsmore and Charman (2013, 2014) noted that while the rise in the measured prevalence of autism has been accompanied by much new research and research investment, the pattern of current United Kingdom autism research funding does not map on to the concerns of the autism community. They reported a clear disparity between the UK’s pattern of funding for autism research and the priorities articulated by the majority of participants. In their online survey of 1,633 participants there was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives.

2.12 This finding was reinforced in the findings of a survey conducted by Autistica (2016), using the process of a James Lind Alliance Priority Setting Partnership (Partridge & Scadding, 2004). They invited autistic individuals and parents as well as professionals working in the field of autism to submit their top three autism research questions. From 3,331 questions initially submitted by 1,213 respondents they generated 89 unique and unanswered questions, the 40 most frequently submitted of which were subject to a further survey in order to identify the 10 most important priorities.

2.13 A further process which gave equal weight to the views of individuals, parents and professionals generated the following 10 priorities for autism research: 1 Which interventions improve mental health or reduce mental health problems in autistic people? How should mental health interventions be adapted for the needs of autistic people? 2 Which interventions are effective in the development of communication/language skills in autism? 3 What are the most effective ways to support/provide social care for autistic adults? 4 Which interventions reduce anxiety in autistic people? 5 Which environments/supports are most appropriate in terms of achieving the best education/life/social skills outcomes in autistic people? 6 How can parents and family members be supported/educated to care for and better understand an autistic relative? 7 How can autism diagnostic criteria be made more relevant for the adult population? And how do we ensure that autistic adults are properly diagnosed? 8 How can we encourage employers to apply person-centred interventions and support to help autistic people maximise their potential and performance in the workplace? 9 How can sensory processing in autism be better understood? 10 How should service delivery for autistic people be improved and adapted in order to meet their needs?

2.14 The focus of the current study on research that is crucial to economic planning, to the planning of service provision and to supporting intervention research and development, places it in a central position in relation to these priorities.