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

French, Blandine; Cassidy, Sarah

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


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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

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