ADHD is characterized as an attention deficit disorder, meaning individuals struggle to sustain focus and are easily distracted. For example, someone with ADHD may have trouble completing tasks, following conversations, or sitting still.
However, some people prefer viewing ADHD as attention dysregulation rather than a deficit. Those with ADHD may argue that they are capable of intense focus at times, especially on interesting tasks (known as hyperfocusing), but have difficulty controlling their attention.
This perspective emphasizes that ADHD is not a lack of attention, but a challenge in regulating it based on the situation’s demands.
Key Points
The research provides valuable insight into the lived experiences of young adults with ADHD, but has limitations in representing mostly white, educated females with the inattentive subtype. More research is needed in broader demographic groups.
Rationale
Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition that often persists into adulthood, with an estimated prevalence of 3-7% in adults globally (Song et al., 2021; Fayyad et al., 2017).
However, ADHD is underdiagnosed in adults,especially females(Jain et al., 2017; Ginsberg et al., 2014; Nussbaum, 2012).
This may be partly because the current diagnostic criteria reflect how the condition presents in males in childhood rather than adults (American Psychiatric Association, 2013).
Qualitative studies have provided some insight into the lived experiences of adults with ADHD (Lefler et al., 2016; Matheson et al., 2013).
However, more qualitative research specifically exploring young adults’ perceptions of the diagnostic criteria and their attentional and emotional symptoms could help refine the criteria to better represent this population. This study aims to address that need.
Method
Thisqualitative studyutilized focus groups with aninterpretive phenomenological analysis approach. Participants were recruited from online ADHD communities and advocacy groups.
Inclusion criteria were being 18-35 years old, having a self-reported clinical diagnosis of ADHD, and scoring ≥23 on the Adult ADHD Self-Report Scale.
The sample included 43 participants (84% female, 72% White). Nine focus groups were conducted over Zoom, with 3-6 participants per group.
Groups were facilitated using a semi-structured discussion guide exploring perceptions of diagnostic criteria, attentional and emotional symptoms, and symptom changes over time.
Results
Diagnosis
Attention
Emotions
Symptom Changes Over Time
Insight
This study provides valuable insight into young adults’ lived experiences with ADHD and how well they feel the diagnostic criteria capture their symptoms.
Notably, participants conceptualized their attention as dysregulated rather than universally deficient. The experience of intermittent hyperfocusing was double-edged – increasing productivity at times but causing problems when misdirected or difficult to interrupt.
This extends previous research identifying hyperfocus as a feature of adult ADHD (Ozel-Kizil et al., 2016; Hupfeld et al., 2019).
The pervasiveness of emotional dysregulation, especially the phenomenon of rejection sensitive dysphoria, also stood out. Previous research has debated whether emotional symptoms are a core feature of ADHD (Shaw et al., 2014).
This study underscores the centrality of these symptoms to participants’ experiences and functioning. RSD in particular was highly distressing and impairing for many, warranting further dedicated research.
Rather than an intrinsic evolution in core symptoms from childhood to adulthood, participants largely attributed changes in symptom presentation to environmental factors.
Increased insight and coping skills were helpful, but reduced structural supports posed challenges. This finding can informtreatment approachesthat bolster skills and modify environmental factors.
Overall, this study argues for a more comprehensive, developmentally-appropriate set of diagnostic criteria for adult ADHD incorporating attentional dysregulation, emotional symptoms, and executive dysfunction.
However, the limited demographic diversity of the sample means more research is needed to determine if the findings generalize to other genders, races/ethnicities, education levels, and ADHD subtypes.
Exploring these symptoms in population-based surveys and cognitive neuroscience studies could build on the qualitative findings.
Strengths
The study had several methodological strengths:
Limitations
The primary limitation is the demographic homogeneity and limited generalizability of the sample. Participants were mostly white, college-educated women with the inattentive ADHD subtype.
Additionally, all participants were involved in online ADHD communities and thus may be particularly attuned to and vocal about ADHD-related issues compared to the broader population of young adults with ADHD. Their perspectives may not represent those of people less engaged with advocacy.
While efforts were made to confirm diagnoses, ADHD was only independently verified for 63% of the sample. It is possible some participants were self-diagnosed. The high education levels also suggest this may not be a representative clinical sample, limiting generalizability.
Finally, inherent to qualitative research, the findings are dependent on the subjective experiences, recall, and articulation skills of participants. Objective measures of symptoms could augment self-report.
Implications
This study has important implications for refining the diagnosis of adult ADHD.
Developing diagnostic interviews and symptom checklists that probe for these additional symptoms could improve the identification of ADHD in this population.
For treating clinicians, the results highlight the importance of screening for emotional symptoms and providing psychoeducation andcoping strategies targeting emotional dysregulationand RSD.
Skills training and environmental modifications may be more beneficial than just medication given the reported trajectory of symptoms.
However, the limited diversity of the sample means clinicians should be cautious about assuming these findings apply to all demographic groups. Gender, race/ethnicity, education level, and ADHD subtype likely influence symptom profiles.
More research is needed to characterize ADHD in males, racial/ethnic minorities, those with lower education, and those with hyperactive/impulsive symptoms.
At a societal level, this study challenges assumptions that ADHD is strictly a disorder of hyperactivity and distractibility in young boys.
Disseminating these findings could increase public recognition of how ADHD presents in young adults, especially women with inattentive symptoms. This could prompt more adults to seek evaluation and reduce stigma.
However, the perspectives of a broader demographic must be incorporated to avoid perpetuating a limited picture.
References
Primary reference
Ginapp, C. M., Greenberg, N. R., MacDonald-Gagnon, G., Angarita, G. A., Bold, K. W., & Potenza, M. N. (2023). “Dysregulated not deficit”: A qualitative study on symptomatology of ADHD in young adults.PLoS ONE, 18(10), Article e0292721.https://doi.org/10.1371/journal.pone.0292721
Other references
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.).https://doi.org/10.1176/appi.books.9780890425596
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Fayyad, J., Sampson, N. A., Hwang, I., Adamowski, T., Aguilar-Gaxiola, S., Al-Hamzawi, A., … & Kessler, R. C. (2017). The descriptive epidemiology of DSM-IV adult ADHD in the world health organization world mental health surveys.ADHD Attention Deficit and Hyperactivity Disorders,9, 47-65.https://doi.org/10.1007/s12402-016-0208-3
Ginsberg, Y., Quintero, J., Anand, E., Casillas, M., & Upadhyaya, H. P. (2014). Underdiagnosis of attention-deficit/hyperactivity disorder in adult patients: a review of the literature.The primary care companion for CNS disorders,16(3), 23591.https://doi.org/10.4088/pcc.13r01600
Hupfeld, K. E., Abagis, T. R., & Shah, P. (2019). Living “in the zone”: hyperfocus in adult ADHD.ADHD Attention Deficit and Hyperactivity Disorders,11, 191-208.https://doi.org/10.1007/s12402-018-0272-y
Jain, R., Jain, S., & Montano, C. B. (2017). Addressing diagnosis and treatment gaps in adults with attention-deficit/hyperactivity disorder.The primary care companion for CNS disorders,19(5), 24623.https://doi.org/10.4088/pcc.17nr02153
Lefler, E. K., Sacchetti, G. M., & Del Carlo, D. I. (2016). ADHD in college: A qualitative analysis.ADHD Attention Deficit and Hyperactivity Disorders,8, 79-93.https://doi.org/10.1007/s12402-016-0190-9
Matheson, L., Asherson, P., Wong, I. C. K., Hodgkins, P., Setyawan, J., Sasane, R., & Clifford, S. (2013). Adult ADHD patient experiences of impairment, service provision and clinical management in England: a qualitative study.BMC health services research,13, 1-13.https://doi.org/10.1186/1472-6963-13-184
Nussbaum, N. L. (2012). ADHD and Female Specific Concerns.Journal of Attention Disorders, 16(2), 87–100.https://doi.org/10.1177/1087054711416909
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Saul McLeod, PhD
BSc (Hons) Psychology, MRes, PhD, University of Manchester
Saul McLeod, PhD., is a qualified psychology teacher with over 18 years of experience in further and higher education. He has been published in peer-reviewed journals, including the Journal of Clinical Psychology.
Olivia Guy-Evans, MSc
BSc (Hons) Psychology, MSc Psychology of Education
Olivia Guy-Evans is a writer and associate editor for Simply Psychology. She has previously worked in healthcare and educational sectors.
