Dysregulated Not Deficit: A Study on Symptoms of ADHD in Adults

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.

Investigating people’s lived experiences of ADHD is crucial for understanding how it manifests in daily life, identifying symptoms and challenges not fully captured by current diagnostic criteria, and informing more effective and personalized treatment approaches.

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

Key Points

• The current diagnostic criteria for ADHD may not accurately capture the experiences of young adults with the condition, especially regarding attentional and emotional dysregulation. Participants felt executive dysfunction was a more comprehensive description of their symptoms than inattention, hyperactivity, and impulsivity.
• Many participants reported being misdiagnosed with other mental health conditions like anxiety and depression before receiving an ADHD diagnosis. Most wished they had been diagnosed earlier in life.
• Rather than an overarching attention deficit, participants described having dysregulated attention, including episodes of hyperfocusing. This hyperfocusing could be helpful for productivity but also caused problems like neglecting other responsibilities.
• Emotional dysregulation was widely reported, including emotional lability, alexithymia, and rejection sensitive dysphoria. Participants described intense emotional reactions and difficulty identifying and expressing their emotions.
• Changes in ADHD symptoms over time were largely attributed to environmental factors and development of coping skills rather than intrinsic changes in symptom presentation. Increased demands and less support in adulthood made symptoms more difficult to manage for some.

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).

Previous research suggests the childhood symptoms in the diagnostic criteria may not encompass the full range of ADHD symptoms experienced by adults, particularly in the domains of attentional and emotional regulation (Faraone et al., 2015).

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

This qualitative study utilized focus groups with an interpretive 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.

Transcripts were coded by two reviewers using NVivo 12 software. Themes were developed inductively with attention to representation of individuals by group-level themes.

Results

Diagnosis

• Most participants felt the current diagnostic criteria did not fully capture their experiences, especially regarding executive dysfunction. The term “developmentally inappropriate” was seen as stigmatizing and inapplicable to adults.
• Many reported being misdiagnosed with conditions like anxiety and depression before receiving an ADHD diagnosis. Most wished they had been diagnosed earlier in life.

Attention

• No participants reported a universal deficit of attention. Instead, they described having dysregulated attention, including intermittent hyperfocusing.
• Hyperfocusing was sometimes helpful for productivity but also caused problems like neglecting basic needs and becoming irritable when interrupted. Time blindness was common during hyperfocusing.
• Environmental factors like novelty, interest, deadlines, and lack of distractions modulated ability to focus. Starting and finishing tasks was challenging.

Emotions

• Intense, labile emotions were commonly described, including unpleasant emotions like frustration and anxiety. Some experienced emotions in a “all-or-nothing” way.
• In addition to difficulty regulating emotions, many struggled with identifying and expressing feelings (alexithymia). Some needed extra time to process emotions after an event.
• Rejection sensitive dysphoria, involving ruminating on perceived rejection and having exaggerated emotional responses, was widely reported and sometimes led to avoidance of social situations. A few participants did not experience emotional dysregulation or RSD.

Symptom Changes Over Time

• A few noted decreased hyperactivity and sensory sensitivity since childhood. More commonly, intrinsic symptoms were seen as unchanged, but development of coping skills and use of medication helped manage them better.
• Some felt symptoms worsened in adulthood due to increased demands and less structural support compared to childhood. Changing environments influenced symptom presentation more so than neurodevelopmental changes.

Insight

This study provides valuable insight into young adults’ lived experiences with ADHD and how well they feel the diagnostic criteria capture their symptoms.

The findings suggest the current criteria may not adequately represent attentional dysregulation, executive dysfunction, or emotional symptoms experienced by this group.

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 inform treatment approaches that 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:

• Recruiting from online communities enabled access to a geographically diverse sample highly invested in ADHD advocacy. This facilitated rich discussion of experiences.
• Using focus groups promoted disclosure about potentially stigmatizing topics through solidarity. The semi-structured format balanced open-ended exploration with targeted questions.
• Rigorous qualitative analysis was conducted, with two coders, iterative discussion of transcripts, and attention to representing individuals within group-level themes.
• Demographic and clinical data were collected to characterize the sample. Diagnosis was confirmed for 63% of participants through documentation or medication records.

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.

The experiences and opinions of males, people of color, those with lower education levels, and those with hyperactive/impulsive presentations are likely underrepresented. This is important as ADHD presentations differ by gender and 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.

The findings suggest the current DSM-5 criteria do not fully capture the attentional dysregulation, executive dysfunction, and emotional symptoms experienced by young adults with ADHD, especially women with the inattentive presentation.

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 and coping strategies targeting emotional dysregulation and 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

Faraone, S. V., Asherson, P., Banaschewski, T., Biederman, J., Buitelaar, J. K., Ramos-Quiroga, J. A., Rohde, L. A., Sonuga-Barke, E. J. S., Tannock, R., & Franke, B. (2015). Attention-deficit/hyperactivity disorder. Nature Reviews Disease Primers, 1(1), 15020. https://doi.org/10.1038/nrdp.2015.20

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

Ozel-Kizil, E. T., Kokurcan, A., Aksoy, U. M., Kanat, B. B., Sakarya, D., Bastug, G., Colak, B., Altunoz, U., Kirici, S., Demirbas, H., & Oncu, B. (2016). Hyperfocusing as a dimension of adult attention deficit hyperactivity disorder. Research in Developmental Disabilities, 59, 351-358. https://doi.org/10.1016/j.ridd.2016.09.016

Shaw, P., Stringaris, A., Nigg, J., & Leibenluft, E. (2014). Emotion dysregulation in attention deficit hyperactivity disorder. American Journal of Psychiatry, 171(3), 276–293. https://doi.org/10.1176/appi.ajp.2013.13070966

Song, P., Zha, M., Yang, Q., Zhang, Y., Li, X., & Rudan, I. (2021). The prevalence of adult attention-deficit hyperactivity disorder: A global systematic review and meta-analysis. Journal of global health, 11. https://doi.org/10.7189/jogh.11.04009

Keep Learning

Here are some potential discussion questions for a college class on this paper:

1. How do the experiences described by participants compare to your understanding of or assumptions about ADHD? What surprised you most about their reported symptoms?
2. The study argues the current ADHD diagnostic criteria do not fully capture the experiences of these young adults, especially regarding executive functioning, emotional dysregulation, and attentional dysregulation. What changes would you propose to the diagnostic criteria based on these findings?
3. Participants largely attributed changes in their symptoms from childhood to adulthood to environmental factors rather than developmental brain changes. What are the implications of this finding for how we conceptualize ADHD and what treatment approaches we prioritize?
4. The phenomenon of rejection sensitive dysphoria emerged as an important and impairing symptom for many participants. Why do you think RSD occurs in ADHD? How could clinicians screen for and treat it based on these qualitative accounts?
5. This study focused on a rather homogenous sample of mostly white, college-educated women with inattentive ADHD. How might the findings differ in a more diverse sample including more males, people of color, adults with lower education levels, and those with hyperactive/impulsive symptoms? What are the dangers of overgeneralizing these results?
6. If you were designing a follow-up study to this one, what would be your next research question? What methodology would you use to build on these qualitative findings in a way that addresses some of the limitations?