“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.

Community Brief

Why is this an important issue?

In the United Kingdom, more than 2.5 million adults with undiagnosed neurodevelopmental conditions such as autism and ADHD often struggle to access diagnosis and support.

What was the purpose of this study?

This study aimed to explore the experiences of adults receiving a diagnosis of autism or ADHD later in life and how the lack of diagnosis affected them.

What did the researchers do?

The research involved interviews with 7 health care professionals and 13 late-diagnosed adults (5 with autism, 5 with ADHD, and 3 with both conditions). We conducted these interviews over Teams and included representations from different countries, conditions, and genders to ensure we represented a wide range of experiences.

What were the results of the study?

Through the analysis, the following five themes were developed from the analysis representing the journey and factors influencing the 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.

First, the study highlights the crucial role of relationships and mental well-being in this process. Understanding emerges as an important factor for individuals in navigating postdiagnosis changes. However, the study also sheds light on the flip side of diagnosis—the burden of carrying a label. Finally, the importance of timing was also another significant theme. The study suggests that being ready for the diagnosis and the right timing play a crucial role in the overall journey. This study emphasizes the nuanced impact of the lack of diagnosis and the various benefits that come with receiving one. Although there are instances of negative impacts and despite the challenges, the study emphasizes the positive impacts of diagnosis, emphasizing the need for a comprehensive understanding of the individual’s experiences and the broader context of relationships and mental health.

What do these findings add to what was already known?

This study adds a more comprehensive view of adults’ experiences, which have not been widely explored in research so far, in terms of the impacts, both negatives and positives, of growing up with autism or ADHD and not knowing.

What are potential weaknesses in the study?

The study would have benefited from having the voice of close friends or family members too as they might have been able to reflect in a different way on any changes the diagnosis brought.

How will these findings help autistic adults now or in the future?

These findings reinforce the benefits that can come with early diagnosis, through understanding, finding a community, and better mental health. The study also highlights the potential drawbacks of this and can help autistic adults, as well as health care professionals, understand the process of diagnosis and its potential impact (negative or positive). It can help autistic adults prepare themselves for the diagnosis process by further understanding what it might mean and how it would impact them, giving them more information.