Title: The SHAPE project: Supporting adults with High-functioning Autism and asPerger syndromE. Mapping and evaluating Specialist Autism Team service models
Funder: Department of Health and Social Care

Abstract: Around 1 in 200 adults have high functioning autism (HFA) or Asperger syndrome (AS). Widespread concerns about poor outcomes for adults with autism resulted in the publication of the Autism Act and Autism Strategy. A key recommendation was each locality should have a specialist, multi-disciplinary community-based team providing: diagnosis/assessments; specialist interventions; support with employment and independent living; care coordination; and training and support to other professionals. Subsequent NICE guidance (1,2) referred to these teams as Specialist Autism Teams (SATs). At the moment there is no evidence to inform the development of SATs and, to date, a number of different models have been implemented across England. OBJECTIVES • Develop a typology of SAT service models currently in operation. • Generate evidence on the effectiveness of different SAT models, and service characteristics which best support positive outcomes for adults with HFA/AS. • Estimate the costs of different SAT models and investigate cost-effectiveness. • Understand how SATs impact on the lives of adults with HFA/AS, families and the local service context. • Generate evidence to inform & support decision-making on commissioning and developing SATs for adults with HFA/AS. RESEARCH QUESTIONS • What models of SATs currently exist? • Do particular service model(s) perform better in terms of achieving positive user outcomes? • Do particular service model (s) perform better in terms of training and support to other practitioners? • What service characteristics are associated with positive outcomes? • What are the costs of the different SAT service models? How do they compare in terms of cost-effectiveness? • What are the processes by which SATs achieve positive outcomes, how do the different service models interfere with or support these processes? • What are service users’ experiences? Do they differ between models? METHODS A two-stage study is proposed. A national mapping exercise will develop a typology of SAT service models (Stage 1). Stage 2 is a mixed-methods evaluation of up to 4 SAT service models. Exemplars of the service models will be selected as research sites. In each site users will be recruited to the study at assessment. User-level outcomes (eg. quality of life) will be measured at assessment and 3, 6 & 12 month follow-up. Service-level outcomes (eg. ‘reach’, time to diagnosis) over a 12 month period will also be assessed. Multivariate analyses and statistical modelling will compare outcomes across SAT models, and identify SAT characteristics which support positive outcomes. The costs of delivering the different elements of a SAT’s work (eg. diagnosis, psychosocial support etc.) will be calculated & compared across models. A process evaluation, involving interviews with users, ‘Significant Others’ and practitioners, will explore: processes by which SATs impact on outcomes; impact of different service models on outcomes & service user experiences; other factors perceived as influencing outcomes. A suite of project outputs will be produced. Targeted dissemination activities are planned. MAIN BENEFITS The Autism Strategy requires localities to improve support to adults with HFA/AS. SATs have been identified as playing a central role. This research will support evidence-based decision-making by commissioners and practitioners regarding the implementation and/or improvement of SATs in their locality.

Lay abstract: The 2010 Autism Strategy was published by the government in response to high levels of concern about the health and well-being of adults with autism, including those with high functioning autism (HFA) and Asperger syndrome (AS). These conditions are more common than previously thought; it is estimated that 1 in 200 adults have this diagnosis. Many experts believe the lack of holistic, autism-specialist services is a key reason why so many adults with HFA & AS experience significant difficulties. The Autism Strategy requires localities to improve support for adults with HFA & AS. It recommends specialist, community based, multi-disciplinary teams are set up to provide, coordinate and oversee services. Recent national guidance for the management of autism in adults called these teams ‘Specialist Autism Teams’ (SATs). However, no evidence exists about the staffing of these teams and how they should operate. As a result a number of different ‘service models’ have emerged among the small number of localities which have developed a SAT. For example, some SATs only serve adults with HFA and AS whereas others support adults across the autism spectrum. Equally, some SATs primarily support other professionals in their work with adults with HFA/AS whereas others engage in a lot of direct work with individuals. This project will investigate the different SAT service models which currently exist. It will compare them in terms of their impact on the lives of adults accessing their services; their costs; and service user experiences. There are two stages to the study. First, we will establish the different types of SATs which have been set up across England. Second, we will select examples of the different types and take a detailed look at whether they are making a difference to users’ lives. We will also investigate whether a particular type(s) of SAT works better than other types of SAT. Service users in our research sites will be invited to take part in the project over a 12 month period. Data on users’ well-being, psychosocial and economic outcomes will be collected at assessment and 3, 6 and 12 months later. We will also interview a sub-sample of service users and family members, as well as professionals working in, or with, the SATs. The interviews will explore how SATs do/do not support the achievement of positive changes in the lives of adults with HFA/AS, and whether experiences differ between different SAT service models. Finally, we will estimate the costs of the different SAT models and investigate whether the cost of providing particular services (eg. diagnosis, social support) varies between teams. Once complete, a range of reports/guidelines for the different audiences who will find the research findings useful will be written. We will also present the research findings at conferences & other events. The research team includes social scientists, health economists, statisticians, a psychiatrist & senior staff from the National Autistic Society. All senior members of the team have an expertise in autism. The research team will be closely advised by a group of adults with HFA/AS. The total cost the project is just over £750K. This cost is justifiable given the significant contribution this study will make to: our understanding of how to support adults with HFA/AS; and decision-making by commissioners and those involved in service/practice development.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH