Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study

Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.

Automated summary

Research on autistic adult services is limited, with a disparity between the recommended features for diagnostic evaluation and post-diagnostic support services. While more than half of respondents experienced most recommended features for diagnostic evaluation, less than 2% of adults or carers, and less than 21% of professionals experienced each recommended feature for post-diagnostic support. This highlights significant gaps between good practice guidelines and the reality of services experienced by autistic adults and professionals.