Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study

Background: The National Institute for Health and Care Excellence recommends that every locality has a ‘Specialist Autism Team’: an specialist autism, community-based, multidisciplinary service that is responsible for developing, co-ordinating and delivering care and support. The National Institute for Health and Care Excellence recommended that this novel delivery model was evaluated. Objectives: The objectives were to identify services fulfilling the National Institute for Health and Care Excellence’s description of a Specialist Autism Team; to describe practitioner and user experiences; to investigate outcomes; to identify factors associated with these outcomes; and to estimate costs and investigate cost-effectiveness of these services. Design: During stage 1, desk-based research and a survey to identify Specialist Autism Teams were carried out. Stage 2 comprised a mixed-methods observational study of a cohort of Specialist Autism Team users, which was followed for up to 2 years from the assessment appointment. The cohort comprised users of a Specialist Autism Team not previously diagnosed with autism (the ‘Diagnosis and Support’ group) and those already diagnosed (the ‘Support-Only’ group). Stage 2 also involved a nested qualitative study of senior practitioners and an exploratory comparison of the Diagnosis and Support group with a cohort who accessed a service which only provided autism diagnostic assessments (‘Diagnosis-Only’ cohort). Setting: The setting in stage 2 was nine Specialist Autism Teams; three also provided a regional diagnostic assessment service (used to recruit the Diagnosis-Only cohort). Participants: There were 252 participants in the Specialist Autism Team cohort (Diagnosis and Support, n = 164; Support Only, n = 88) and 56 participants in the Diagnosis-Only cohort. Thirty-eight participants (across both cohorts) were recruited to the qualitative evaluation and 11 practitioners to the nested qualitative study. Main outcome measures: The World Health Organization Quality of Life assessment, abbreviated version (psychological domain) and the General Health Questionnaire (12-item version). Data sources: Self-reported outcomes, qualitative interviews with users and focus groups with practitioners. Results: A total of 18 Specialist Autism Teams were identified, all for autistic adults without learning disabilities. Services varied in their characteristics. The resources available, commissioner specifications and clinical opinion determi