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

J Autism Dev Disord. 2021 Nov;51(11):4129-4146. doi: 10.1007/s10803-021-04873-5. Epub 2021 Jan 27.

Abstract

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.

Keywords: Adults; Autism spectrum disorder; Diagnosis; Services.

MeSH terms

  • Adult
  • Autism Spectrum Disorder* / diagnosis
  • Autistic Disorder* / diagnosis
  • Diagnostic Services
  • European Union
  • Humans
  • Surveys and Questionnaires