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

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.