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

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.