Post-diagnostic support for adults diagnosed with autism in adulthood in the UK: A systematic review with narrative synthesis.

Abstract

Lay abstract: More adults than ever before are seeking an autism diagnosis in adulthood. While receiving a diagnosis may be beneficial, many autistic people struggle to navigate their new diagnosis, and require support. This study conducted a systematic review of previous research on the support available after diagnosis (post-diagnostic support) for autistic adults without intellectual disability who were diagnosed in adulthood in the UK. A systematic review is a pre-planned method of searching for all relevant studies, before combining these to answer a larger question. The study aimed to investigate the availability of such support and its effectiveness, and to explore autistic adults' experiences of accessing support. We also used publicly available information to create a map of the post-diagnostic support services currently available across the UK. A systematic search of seven databases was conducted, to identify UK-based studies published after 2012. Nineteen studies were eligible to be included in the study. Although some form of post-diagnostic support is available across most areas in the UK, this mostly consists of providing information and 'signposting' the person to other services. These options may not meet the needs of autistic people, who want services such as psychoeducation (therapy whereby an individual receives education about their diagnosis to improve understanding and self-management), and peer support. Findings highlight the need for adequate support to alleviate the post-diagnostic challenges autistic adults face. The study could not evaluate the effectiveness of support options in the UK due to a lack of information about this in published research. Research shows that autistic adults would like low-level support services, psychoeducation, and peer support, and may also prefer autistic-led support. Further research is required to develop and evaluate post-diagnostic support programmes which include these elements.