Adults’ Experience of an Asperger Syndrome Diagnosis

Abstract

This study explores the impact on 74 adults attending an Asperger syndrome diagnosis clinic. Feedback forms containing quantitative and qualitative measures were completed 3 months post-assessment. Qualitative responses were analyzed using thematic content analysis. Regarding questions about their emotional response, participants reported themes of “Relief,” “Feeling better about self,” “Mixed feelings,” “No clear feelings,” and “Negative feelings.” Regarding the impact of the diagnosis on their lives, participants reported themes of “Understanding and explanation,” “Self-acceptance,” “Social interaction,” and “Support.” A “sub-clinical threshold” group reported a theme of “Diagnostic disappointment” relating to their experience of not receiving a full diagnosis. There were no differences between pre- and post-assessment on standardized measures of anxiety, depression, or satisfaction with life. However, on a self-report Likert-type scale, participants who received a full diagnosis reported a significantly more positive effect of the diagnosis on their lives, compared with those who did not.

Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study

“…Previous qualitative and quantitative studies of adults' experiences of being diagnosed with autism also report relief as a predominant emotional response, and that the diagnosis offered an explanation for their experiences of life. 84,[89][90][91][92] They too describe the potential range of emotions, both positive and negative, which may be experienced. 79,91,93,94 Similarly, they also report how the diagnosis may facilitate improvements in family relationships and the support received from other services or educational establishments/the workplace.…”

Measuring Depression in Autistic Adults: Psychometric Validation of the Beck Depression Inventory–II

“…Despite the large burden of depression in this population, few studies have attempted to establish the psychometric properties of common depression symptom measures in adults with ASD (for a review, see Cassidy, Bradley, Bowen, et al, 2018). Studies measuring depression in ASD have previously used a number of measures validated in the general population, including the Beck Depression Inventory-Second Edition (BDI-II; Moss et al, 2015), Depression Anxiety Stress Scales (Maddox & White, 2015;Nah et al, 2018), Hamilton Depression Rating Scale (Buchsbaum et al, 2001), Hospital Anxiety and Depression Scale (Powell & Acker, 2014), Montgomery-Åsberg Depression Rating Scale (Wentz et al, 2012), and Patient Health Questionnaire-9 (PHQ-9; Hedley et al, 2018) without assessing the validity of those measures in ASD. In recent years, several studies have attempted to fill this gap, reporting psychometric properties of the BDI-II (Gotham et al, 2015), Hospital Anxiety and Depression Scale (Uljarević et al, 2018), and PHQ-9 (Arnold et al, 2019).…”

Participants Over-Estimate How Helpful They Are in a Two-Player Game Scenario Toward an Artificial Confederate That Discloses a Diagnosis of Autism

“…In addition, there was no significant association between participants who believed that the AC diagnostic disclosure made them more helpful compared to whether they were actually helpful during the game. These findings help to explain why diagnostic disclosure, despite enhancing social perceptions by others, can still result in negative discrimination in terms of behavior as reported by autistic people themselves (Davidson and Henderson, 2010; Powell and Acker, 2016; Treweek et al, 2018).…”

“…To date a number of studies have explored how autistic expressions and behavior are perceived by non-autistic people through vignettes and thin-slice judgements (e.g., utilizing video, image, and audio), showing that disclosing a diagnosis of autism significantly improves evaluations (e.g., Chambres et al, 2008; Faso et al, 2014; Brosnan and Mills, 2016). However, reports from autistic people indicate that disclosure of a diagnosis can also result in stigma and negative discrimination (Davidson and Henderson, 2010; Powell and Acker, 2016; Treweek et al, 2018), resulting in a gap in the literature in connecting self-reported perceptions with actual behavior.…”