Women with ADHD are often diagnosed later than men due to lack of awareness of female presentations, masking of symptoms by coping strategies and comorbidities, and need for self-advocacy to obtain assessment.
Late diagnosis delays treatment and support, exacerbating impairments.
This study explored women’s experiences being diagnosed with ADHD in adulthood to inform improvements in care.
Babinski, D. E., & Libsack, E. J. (2024). Adult Diagnosis of ADHD in Women: A Mixed Methods Investigation. Journal of Attention Disorders, 10870547241297897. https://doi.org/10.1177/10870547241297897
Key Points
- This mixed methods study examined the experiences of 14 women (mean age 39.43) diagnosed with ADHD in adulthood.
- An ADHD diagnosis was found to provide validation, self-compassion, adaptive coping strategies, and social support, but also difficulties accessing care, limitations of treatments, and stigma.
- Unrecognized ADHD symptoms, diagnostic complexity, and masking factors hindered earlier diagnosis. Women described varied assessments and self-advocacy to obtain the diagnosis.
- Study limitations included small sample size, lack of member checking, and omission of some relevant topics. Recommendations are made to improve ADHD assessment and treatment in women.
Rationale
ADHD is often underdiagnosed in girls and women, with equal rates to men emerging only in adulthood (Jensen & Steinhausen, 2015; Kessler et al., 2006).
Recent data shows a marked increase in stimulant prescriptions for adult women (Danielson et al., 2023).
Qualitative research is needed to understand women’s experiences being diagnosed with ADHD in adulthood and inform improvements in clinical care for this population.
Previous qualitative studies have examined ADHD diagnosis in young adult or older women (Henry & Jones, 2011; Morgan, 2023; Vincenti et al., 2023), with only one small study focused on middle adulthood (Holthe & Langvik, 2017).
This mixed methods study aimed to address this gap.
Method
Mixed methods study with quantitative data (participant characteristics, polls) and qualitative data from two focus groups.
Interpretative Phenomenological Analysis was used.
Procedure
Women diagnosed with ADHD in middle adulthood were recruited online and completed eligibility screening, rating scales, and focus groups.
Groups were semi-structured with discussion prompts.
Sample
14 women, mean age 39.43 (SD=6.37), diagnosed with ADHD in adulthood (29-55 years old).
Most had ADHD Combined Type and anxiety disorders.
Measures
Adult ADHD Self-Report Scale to confirm ADHD diagnosis. Impairment Rating Scale to confirm impairment in ≥2 domains. Demographic questionnaire.
Statistical measures
Descriptive statistics reported for sample characteristics and poll responses.
No inferential statistics conducted.
Results
Benefits of ADHD Diagnosis:
64% said diagnosis changed life for the better, providing validation, coping strategies and support.
Challenges of ADHD Diagnosis:
7% said diagnosis made life harder, 50% were unsure. Challenges included accessing knowledgeable providers, insurance issues, costs, limited treatment options, and stigma. Many lamented the long delay before diagnosis.
Barriers to Obtaining ADHD Diagnosis:
36% said diagnosis was hard to get, 50% denied difficulty, 14% unsure.
Barriers included lack of awareness of female ADHD among patients and providers, masking by comorbidities and coping mechanisms, and need for self-advocacy and sometimes burdensome assessments.
Insight
This study provides critical firsthand accounts to contextualize recent data showing increased ADHD treatment in adult women.
Benefits of diagnosis included validation, improved self-understanding and coping, and social support. However, women still faced significant barriers to care, inappropriate treatment, and stigma.
Factors that delayed diagnosis included lack of awareness of female ADHD presentations, comorbidities, and environmental supports masking symptoms.
Women described having to strongly self-advocate, even when impaired, to obtain an ADHD evaluation.
Variable diagnostic practices, from brief assessments to extensive testing, were reported. These insights can guide improvements in ADHD identification and treatment for women.
Implications
Findings highlight the need for increased awareness of female ADHD presentations, routine screening, stepped-care approaches to assessment, and consideration of contextual masking factors.
Treatment of ADHD with comorbidities, team-based care models, and accessible non-pharmacological treatments like CBT also require more awareness.
Neurodiversity-affirming approaches leveraging women’s strengths and online ADHD communities are also important.
Strengths
This study has some methodological strengths, including:
- Recruited understudied group: women diagnosed with ADHD in middle adulthood
- Mixed methods captured firsthand experiences and quantitative data
- Two focus groups likely captured most key themes per prior research
Limitations
This study also had some methodological limitations, including:
- Some relevant topics not discussed
- Small, self-selected sample, mostly with ADHD-C and anxiety
- Lack of racial/ethnic diversity
- ADHD diagnoses were self-reported
- Member checking of qualitative results not conducted
Conclusion
This study provides valuable insights into women’s experiences of being diagnosed with ADHD in adulthood.
While diagnosis conferred important benefits, women still faced many challenges in obtaining appropriate assessment and treatment.
Findings can inform clinical and research efforts to reduce gender disparities in ADHD care. However, the small sample and limitations in diversity and scope highlight the need for further research to fully understand the range of women’s experiences.
The complexity of women’s trajectories in having their ADHD recognized and supported requires ongoing study and clinical attention.
References
Primary reference
Babinski, D. E., & Libsack, E. J. (2024). Adult Diagnosis of ADHD in Women: A Mixed Methods Investigation. Journal of Attention Disorders, 10870547241297897. https://doi.org/10.1177/10870547241297897
Other references
Danielson M. L., Bohm M. K., Newsome K., Claussen A. H., Kaminski J. W., Grosse S. D., Siwakoti L., Arifkhanova A., Bitsko R. H., Robinson L. R. (2023). Trends in stimulant prescription fills among commercially insured children and adults: United States, 2016–2021. MMWR. Morbidity and Mortality Weekly Report, 72(13), 327–332. https://doi.org/10.15585/mmwr.mm7213a1
Henry E., Jones S. H. (2011). Experiences of older adult women diagnosed with attention deficit hyperactivity disorder. Journal of Women and Aging, 23(3), 246–262. https://doi.org/10.1080/08952841.2011.589285
Holthe M. E. G., Langvik E. (2017). The strives, struggles, and successes of women diagnosed with ADHD as adults. SAGE Open, 7(1), 1–12. https://doi.org/10.1177/2158244017701799
Jensen C. M., Steinhausen H. C. (2015). Time trends in incidence rates of diagnosed attention-deficit/hyperactivity disorder across 16 years in a nationwide Danish registry study. Journal of Clinical Psychiatry, 76(3), e334–e341. https://doi.org/10.4088/JCP.14m09094
Kessler R. C, Adler L., Barkley R., Biederman J., Conners C. K., Demler O., Faraone S. V., Greenhill L. L., Howes M. J., Secnik K., Spencer T., Ustun T. B., Walters E. E., Zaslavsky A. M. (2006). The prevalence and correlates of adult ADHD in the United States: Results from the national comorbidity survey replication. The American Journal of Psychiatry, 163(4), 716–723. https://doi.org/10.1176/appi.ajp.163.4.716
Morgan J. (2023). Exploring women’s experiences of diagnosis of ADHD in adulthood: A qualitative study. Advances in Mental Health. Advance online publication. https://doi.org/10.1080/18387357.2023.2268756
Vincenti S. C., Galea M., Briffa V. (2023). Issues which marginalize females with ADHD: A mixed methods systematic review. Humanities and Social Science Research, 6(2), 30. https://doi.org/10.30560/hssr.v6n2p30
Keep Learning
- How could increased awareness of female ADHD presentations be promoted among healthcare providers, educators, and the public?
- What system-level changes could improve access to appropriate ADHD assessment and treatment for women?
- How might online ADHD communities be leveraged to support women while also combating misinformation?
- What research is needed to develop and test non-pharmacological treatments tailored to the needs of women with ADHD?
