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.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
