UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder: A systematic review of the qualitative evidence

Abstract

The purpose of this article is to systematically identify, appraise and synthesise qualitative research concerning UK parents’ experiences of their child receiving a diagnosis of autism spectrum disorder. In total, 11 articles were located through a systematic search of five databases, reference lists, citations and grey literature. These were critically appraised and their results synthesised using meta-ethnography. The quality scores given to included studies were variable, so suggestions are made to improve reporting of future research. Three third-order constructs were developed: (1) emotional needs, (2) informational needs and (3) relational needs. Each relates to parents’ needs as they navigate the process of making sense of their child by seeking and adjusting to a diagnosis of autism spectrum disorder. Parents’ experiences of assessment and diagnosis of their children varied, but these needs were evident across the course of the process. Fathers seemed to find it more difficult than mothers to reconcile having a child with autism spectrum disorder, which may have been grounded in a sense of exclusion from the assessment process. The findings should be considered by professionals working with children, particularly those directly involved in diagnosing autism spectrum disorder. Clinical implications emphasise the need for consideration of parents’ emotional needs, provision of information to aid understanding, and strong relationships with professionals. Future clinical research, which should be informed by quality standards, might develop and evaluate standards of assessment and diagnosis, including post-diagnostic support.