Strengths focused post-diagnostic support for autistic young adults: A feasibility RCT

Project: Central government, health and local authorities

Project Details

Description

Autistic people communicate, interact and experience the world in a unique way. Under current care provision, most autistic people find the transition to adulthood difficult. For many it is like falling off a cliff : they suffer a dramatic reduction in support and require self-management skills that they have not yet had the chance to develop. The costs to autistic people of not getting the support they need when transitioning to adulthood are substantial. These include high risks of: mental and physical ill health difficulties, unemployment, homelessness, social isolation, low quality of life and premature mortality. Unsuccessful transition to adulthood also impacts carers quality of life and finances; and is expensive for the UK taxpayer. Social care services can play a key role in supporting autistic people transitioning to adulthood, but currently there is almost no evidence on how this can best be done. The charity Ambitious About Autism, in partnership with autistic people, has developed an 'Autistic Transition to Adulthood Group' (A-TAG): an online, social care group that supports transition by enhancing: (1) self-management skills; and (2) ability to identify and access appropriate social care services, when needed. A definitive RCT is required to test if A-TAG is effective, but currently we do not know if such a trial is feasible. Study Aim To investigate the feasibility of a fully-powered RCT of A-TAG as compared to care as usual. Methods Participants will be 70 autistic people, aged 16-25 years. They will be recruited nationally via our charity partners (Ambitious About Autism, National Autistic Society), to promote participation of a diverse, representative sample. Participants will be randomised to receive A-TAG or care as usual, with outcomes measured at baseline, 8-, 16- and 24- weeks. Qualitative work will be conducted with autistic participants, carers, and social care workers delivering A-TAG. Key feasibility outcomes will be: (i) recruitment and retention rates; (ii) acceptability and successful completion of randomisation, intervention and outcome measurement; (iii) characterisation of care as usual; and (iv) calculation of outcome measure variances to inform sample size calculation for a fully-powered trial. The research team includes autistic and non-autistic people. The A-TAG intervention was co-produced with autistic people and diverse autistic voices will continue to shape the project at all stages. Delivery Timelines All outcomes will be delivered within the 22-month study timeframe. If indicated, a protocol and funding bid for the fully-powered trial will be complete within six months of the study end. Anticipated Impact and Dissemination The study will have immediate impact by indicating whether a fully-powered A-TAG RCT is feasible, and how such a study should be optimally designed. If we proceed to a fully-powered trial, this study will lay the foundations for a step change in the evidence base on how social care can support autistic young people. This has the potential to initiate a cascade of positive consequences, including greater wellbeing and better educational, occupational, health and socio-economic outcomes. This in turn would save money for social care, NHS and other services.
StatusActive
Effective start/end date1/09/2330/06/25

Collaborative partners

  • University of Bath (lead)
  • Ambitious about Autism
  • National Autistic Society
  • University College London
  • University of York

Funding

  • National Institute for Health Research

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