Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom

• DOI: 10.1007/s10803-014-2161-3
• Publication Date: 2014-06-10T17:26:27Z
• Authors: Lydia Jones; Lorna Goddard; Elisabeth L. Hill; Lucy A. Henry; Laura Crane
• Keywords: Adult; Male; Adolescent; RJ; Depression; Data Collection; 05 social sciences; Anxiety; Middle Aged; United Kingdom; Young Adult; Child Development Disorders, Pervasive; Patient Satisfaction; Diagnosis; Adults; Humans; Female; 0501 psychology and cognitive sciences; Survey; Aged

A total of 128 adults with high-functioning autism spectrum disorders were surveyed concerning the process they went through to obtain their diagnosis and the subsequent support they received. Results suggested that routes to diagnosis were quite heterogeneous and overall levels of satisfaction with the diagnostic process were mixed; 40 % of respondents were 'very/quite' dissatisfied, whilst 47 % were 'very/quite' satisfied. The extent of delays, number of professionals seen, quality of information given at diagnosis and levels of post-diagnostic support predicted overall satisfaction with the diagnostic process. Important areas and suggestions for improvement were noted for all stages of the diagnostic pathway. Respondents also displayed above average levels of depressed mood and anxiety, with greater support being requested in this area.