Post-diagnostic support for adults diagnosed with autism in adulthood in the UK: A systematic review with narrative synthesis
Authors: Norris Jade Eloise , Harvey Rebecca , Hull Laura 
Published: September 2024

Autism diagnoses in adulthood have risen substantially over recent years. While providing potential benefits, many autistic adults struggle to navigate their new diagnosis. Our review aimed to synthesise the evidence for post-diagnostic support for autistic adults without intellectual disability diagnosed in adulthood in the UK: investigating availability, efficacy, and autistic adults’ experiences. A systematic search of four biomedical and three grey literature databases was conducted to identify UK-based studies published since 2012. A total of 27,581 records were screened in duplicate, with 19 studies regarding post-diagnostic support included. A narrative synthesis was undertaken due to anticipated heterogeneity. A service mapping exercise also provided a summary of post-diagnostic service provision currently available across the UK. Findings indicate that many services across the UK provide information and signposting as their primary form of post-diagnostic support, whereas autistic adults desire low-level support services, psychoeducation, and peer support. Evidence regarding the efficacy of post-diagnostic support was unavailable. This review highlights the need for adequate support to alleviate post-diagnostic challenges and improve autistic adults’ quality of life. Low-level support services, psychoeducation, and peer support appear acceptable and feasible, with a preference often indicated for autistic-led support. Future research should develop manualised post-diagnostic support programmes and assess their efficacy.

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.