Experienced consequences of being diagnosed with ADHD as an adult – a qualitative study

Despite increasing knowledge of attention deficit hyperactivity disorder (ADHD) across the life span, there is still little research on adults’ own experiences of being diagnosed with ADHD. The aim of the present study was to explore and describe patients’ experiences and perceptions of being diagnosed with ADHD in adulthood. The study can be seen as an attempt to validate the diagnosis from a patient perspective.

Twenty-one adults diagnosed with ADHD were individually interviewed. The interviews were open-ended and exploratory, analysed with a qualitative phenomenographical approach, and the results were described in categories.

Positive experiences were dominant, but there was a complex intra- and inter-individual variation of experiences. Descriptions focused on the diagnosis, on identity, and on life. The diagnosis was described as explaining a previously inexplicable life history, but was also questioned, both as a phenomenon and in relation to the individual (the diagnosis in focus). It was experienced as providing self-knowledge and increased value, but could also cause devaluation and concern about identity (identity in focus). It meant help to achieve a better life, but was also perceived to restrict possibilities and cause disappointment over lack of professional help. It could lead to a wish for an earlier diagnosis that could have spared suffering, as well as to a changed view of the participants’ relatives (life in focus). All but one of the interviewees expressed important positive consequences of being diagnosed with ADHD. About half of them acknowledged negative aspects of being diagnosed, but none regretted going through the neuropsychiatric evaluation.

From a patient perspective, there are major positive consequences of being diagnosed with ADHD, compared to the undiagnosed situation. Knowledge of the individual’s combination of experiences is important for professionals, as these experiences can affect well-being and interfere with treatment. Negative experiences in particular might need to be addressed in the treatment work.