A Qualitative Study on the Experiences of Adult Females with Late Diagnosis of ASD and ADHD in the UK

TL;DR

This study explores the challenges faced by UK adult women who receive late diagnoses of ASD or ADHD, highlighting issues like gender bias and lack of support.

Contribution

The study provides new qualitative insights into the UK diagnostic experiences of adult females with ASD and ADHD, emphasizing gender-specific barriers.

Findings

Healthcare professionals often show limited understanding and empathy toward adult females with ASD/ADHD.

Post-diagnostic support is insufficient, with most participants receiving no follow-up care.

The diagnostic process is lengthy, with waiting times often exceeding three years.

Abstract

Background: Adult females with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) are frequently underdiagnosed due to gender bias, overlapping symptoms, and limited awareness among healthcare professionals. The scarcity of research on this subject—particularly in the UK context—underscores the need for further investigation. Accordingly, the aim of this study was to explore the lived experiences of adult females receiving a late diagnosis of ASD and/or ADHD and to identify key barriers within the UK diagnostic pathway. This study addresses a critical knowledge gap by examining the factors contributing to delayed diagnosis within the United Kingdom. Study Design and Method: The study employed a qualitative approach, utilising an anonymous online questionnaire survey comprising nine open-ended questions. Responses were obtained from 52 UK-based females aged 35–65 years who had either received or were awaiting a diagnosis of ASD and/or ADHD. Data were analysed thematically within a constructivist framework. Findings: The analysis revealed three overarching themes: (i) limited understanding and lack of empathy among healthcare professionals, (ii) insufficient post-diagnostic support, with most participants reporting no follow-up care, and (iii) a complex, protracted diagnostic process, often involving waiting periods exceeding three years. Gender bias and frequent misdiagnosis were recurrent issues, contributing to significant psychological distress. These findings underscore the need for systemic reforms and align closely with gaps identified in the existing literature. Conclusions: The findings emphasise the urgent need for gender-sensitive diagnostic frameworks, enhanced professional training, and a person-centred approach to care. Key recommendations include shortening diagnostic waiting times, strengthening healthcare professionals’ knowledge base, and ensuring equitable and consistent post-diagnostic support.

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