Mrs BLANDINE FRENCH Blandine.French@nottingham.ac.uk
SENIOR RESEARCH FELLOW
“Going Through Life on Hard Mode”—The Experience of Late Diagnosis of Autism and/or ADHD: A Qualitative Study
French, Blandine; Cassidy, Sarah
Authors
Dr SARAH CASSIDY SARAH.CASSIDY@NOTTINGHAM.AC.UK
ASSOCIATE PROFESSOR
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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