The experience of seeking, receiving, and reflecting upon a diagnosis of autism in the UK: A meta-synthesis of qualitative studies conducted with autistic individuals

Wilson, Rosemarie B., Thompson, Andrew R. ORCID: https://orcid.org/0000-0001-6788-7222, Rowse, Georgina and Freeth, Megan 2023. The experience of seeking, receiving, and reflecting upon a diagnosis of autism in the UK: A meta-synthesis of qualitative studies conducted with autistic individuals. Research in Autism Spectrum Disorders 103 , 102135. 10.1016/j.rasd.2023.102135

Preview

PDF - Published Version Available under License Creative Commons Attribution. Download (733kB) | Preview

Abstract

Background: The autism diagnosis process can profoundly impact an individual’s life. The purpose of this review is to systematically identify, appraise and synthesise qualitative research concerning individuals’ experiences of seeking, receiving and reflecting upon a diagnosis of autism in the UK. The purpose is to improve understanding of how this process is experienced and identify potential areas for improvement. Method: Six databases were systematically searched for qualitative studies exploring autistic individuals’ experiences of the autistic diagnostic process in the UK. Nineteen studies met inclusion criteria and were analysed using Thematic Synthesis. Results: Three super-ordinate themes were identified; ‘Negotiating self-identity’ making sense of the autism diagnosis, including navigating a distressing assessment process, conflicting emotions towards diagnosis, neurodiversity, self-reflection and self-kindness. ‘Feeling Misunderstood’ in society and the impact on well-being, including social challenges and mental health misdiagnosis. ‘Support Post-Diagnosis’ including increased understanding, connection and validation. Overall, limited understanding from professionals was found to create barriers to assessment and acquisition of appropriate support. Conclusions: Adjustment to an autism diagnosis is a dynamic process accompanied by a range of emotional responses. In many cases the diagnosis facilitated self-understanding and self-kindness, contrasting with self-criticism pre-diagnosis. It is recommended that clinicians attempt to recognise strengths and support individuals during the typically deficit-focused autism assessment process. Findings demonstrate the need for further autism training for both specialist and non-specialist professionals and the benefits of peer support around the diagnostic process. This review also highlights wider societal misconceptions of autism, intolerance of difference and the subsequent mental health impacts on autistic individuals.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Psychology
Publisher:	Elsevier
ISSN:	1750-9467
Date of First Compliant Deposit:	14 March 2023
Date of Acceptance:	26 February 2023
Last Modified:	03 May 2023 23:19
URI:	https://orca.cardiff.ac.uk/id/eprint/157706

Actions (repository staff only)

Edit Item