“Going Through Life on Hard Mode”—The Experience of Late Diagnosis of Autism and/or ADHD: A Qualitative Study

French, Blandine; Cassidy, Sarah

Abstract

Background: In the United Kingdom, more than 2.5 million adults with undiagnosed neurodevelopmental conditions, such as autism and attention-deficit/hyperactivity disorder (ADHD), can face difficulties accessing diagnosis and support. Our qualitative study explores people's experiences of receiving a diagnosis in adulthood and its impact on their lives. Methods: We conducted semi-structured interviews with seven health care professionals and 13 late-diagnosed adults (5 autistic, 5 with ADHD, and 3 with dual diagnoses) using reflexive thematic analysis. Results: We developed five themes from the analysis representing the journey and factors influencing participants' experiences of receiving a late diagnosis: (1) the key role of relationships and mental well-being; (2) the wider impact on well-being and lifelong mental health; (3) understanding-the answer to postdiagnosis changes; (4) the flip side of diagnosis-the burden of a label; and (5) are you ready-the importance of timing. Conclusion: Our study demonstrates the multiple impacts a lack of diagnosis has and the many benefits experienced from receiving one. Although a lack of diagnosis can at times have some negative effects, the importance of understanding and the wider impacts on relationships and mental well-being are discussed. Primarily, the emerging concept of being ready and the importance of the right timing highlight an important nuance in the diagnosis journey.

Citation

French, B., & Cassidy, S. (2024). “Going Through Life on Hard Mode”—The Experience of Late Diagnosis of Autism and/or ADHD: A Qualitative Study. Autism in Adulthood, https://doi.org/10.1089/aut.2024.0085

• Journal Article Type: Article
• Acceptance Date: Jun 28, 2024
• Online Publication Date: Jul 22, 2024
• Publication Date: Jul 22, 2024
• Deposit Date: Jul 1, 2024
• Publicly Available Date: Jul 22, 2024
• Journal: Autism in Adulthood
• Print ISSN: 2573-9581
• Electronic ISSN: 2573-959X
• Publisher: Mary Ann Liebert
• Peer Reviewed: Peer Reviewed
• DOI: https://doi.org/10.1089/aut.2024.0085
• Public URL: https://nottingham-repository.worktribe.com/output/36861991
• Publisher URL: https://www.liebertpub.com/doi/10.1089/aut.2024.0085
• Additional Information: Final publication is available from Mary Ann Liebert, Inc., publishers https://www.liebertpub.com/doi/10.1089/aut.2024.0085