Adults’ experiences of the diagnostic assessment: what does it tell us about post-diagnostic support?

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INTRODUCTION:The diagnosis of autism in adulthood can present a number of challenges. It can raise issues of identity, and there is new knowledge
to acquire about autism and applying that knowledge to their lives and living with autism. In many countries, access to diagnostic assessment for adults suspected as having autism is improving. However, such provision has been developed in the absence of an evidence base about how these services should be designed, particularly in terms of support immediately post-diagnosis. This paper reports findings from a study which compares the experiences of adults who received a diagnostic assessment with no/minimal psychoeducation post-diagnosis with those who received a comprehensive psychoeducation intervention post-diagnosis.
METHODS:Qualitative interviews with 38 adults who underwent a diagnostic assessment for autism within the previous 12 months. Recruited
from across 9 services. Fourteen had received no/minimal psychoeducation, and 24 comprehensive psychoeducation.
RESULTS: Access to psychoeducation post-diagnosis affects short and longer-term adjustment to being diagnosed with autism. Furthermore,
the experience of not being offered any support, or being unable to access such support, is an additional source of distress, experienced as rejection and reinforcing a sense of social isolation. Solely providing of written information provision was consistently regarded as inadequate.
DISCUSSION: Findings have implications for the design and scope of diagnostic assessment services. They also point to the importance of
providing post-diagnosis psychoeducation in more than one format or mode of delivery.
Original languageEnglish
Publication statusPublished - 15 Sept 2019
EventAutism-Europe International Congress: A new dynamic for change and inclusion - Congress Center Nice Acropolis, Nice, France
Duration: 13 Sept 201915 Sept 2019
Conference number: 12


ConferenceAutism-Europe International Congress
Internet address

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