Exploring Women’s Experiences Of Diagnosis Of ADHD In Adulthood

Women are more likely to be diagnosed with ADHD later in life due to gender biases, male-oriented diagnostic criteria, and differences in symptom presentation.

This often results in years of misdiagnosis, self-blame, and missed opportunities for support.

Understanding the unique challenges women face in obtaining an ADHD diagnosis is crucial for improving early detection, providing appropriate interventions, and mitigating the long-term negative impacts on mental health, self-esteem, and overall life outcomes.

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

Key Points

• Women are more likely than men to be diagnosed with ADHD later in life, often due to gender bias and male-oriented diagnostic criteria.
• Late diagnosis of ADHD in women can have significant negative impacts on self-esteem, mental health, identity, and life opportunities.
• The study found that seeking an ADHD referral and diagnosis was challenging for many women, with long wait times and dismissive attitudes from some medical professionals.
• While diagnosis brought relief and understanding for many, it was often accompanied by sadness and anger about past struggles.
• Psychological support after diagnosis was lacking for most participants, with medication being the primary intervention offered.
• Participants identified numerous reasons for late diagnosis, including gender stereotypes, masking behaviors, misdiagnosis of other mental health conditions, and lack of professional knowledge about ADHD presentation in women.
• The research highlights the need for increased training on ADHD in women for medical and mental health professionals, as well as improved support systems post-diagnosis.
• The study’s limitations include a primarily university student sample and potential recall bias.

Rationale

This study addresses a significant gap in research on women’s lived experiences of late ADHD diagnosis in adulthood.

Understanding women’s perspectives has been identified as crucial for improving outcomes for women with ADHD (Chronis-Tuscano, 2022).

Previous research has shown that late diagnosis is associated with detrimental impacts on women’s self-esteem, mental health, identity, and life chances (Attoe & Climie, 2023; Gershon, 2002; Stenner et al., 2019; Young et al., 2008).

However, there is limited qualitative research exploring the impact of late diagnosis on women’s lives from their own perspectives.

This study aims to fill this gap by documenting the lived experiences of women diagnosed with ADHD in adulthood.

Method

The study employed a qualitative approach using narrative interviews. Fifty-two women aged 19-56 who had been diagnosed with ADHD as adults participated in the study.

Interviews were conducted online via Microsoft Teams between March 2022 and March 2023. The interviews lasted an average of 1 hour and 15 minutes and were transcribed verbatim.

Thematic analysis was used to generate themes from the data.

Sample

The sample consisted of 52 women aged 19-56 years who had been diagnosed with ADHD as adults by a psychiatrist in England, UK.

The majority of participants were university students, with some having completed their studies and working.

Over half of the participants identified as white. Many reported co-occurring conditions and previous contact with mental health providers.

Results

The study identified six main themes:

1. ADHD as a possibility: Many participants became aware of ADHD as a possible explanation for their experiences through social media or transitions in life, rather than through medical professionals.

“The things I used to do, like study last minute and panic cram, was no longer working in higher education, my grades started to drop, and I couldn’t balance the deadlines anymore.”- Rachel

2. Seeking an ADHD referral: Many participants faced challenges in getting referrals, with some GPs blocking the diagnosis pathway or lacking knowledge about referral processes.

“Seeking medical care as a person with ADHD is not ADHD friendly.” – Participant quote

3. Impact of ADHD diagnosis: While diagnosis brought relief and understanding for many, it also led to complex emotions about past struggles.

“Getting the diagnosis was a big thing for me. I understand my life now, I feel that I have got the power back; I have an opportunity to rebuild, unlearn a lot of things that I’ve thought about myself, try to get back some confidence.” – Sharon

4. Trauma associated with late ADHD diagnosis: Many participants reported painful childhood experiences and difficulties in school that they attributed to undiagnosed ADHD.

“I look back on what I went through as a child and I am so angry and bitter about it, I was crying out for help. My life has been harder than it needed to be.” – Esther

5. Medical, mental health and psychological support after ADHD diagnosis: Most participants reported a lack of psychological and mental health support post-diagnosis, with medication being the primary intervention offered.

“It is so painful, I am finding it hard to cope with, there are 42 years of pain that I must deal with, and no support and I am fearful of people’s reactions to it and their judgements. I was just offered medication and that was it, no support.” – Kate

6. ‘Why was it not picked up earlier’: Participants identified various reasons for late diagnosis, including gender stereotypes, masking behaviors, and lack of professional knowledge about ADHD in women.

“Girls are always expected to be perfect and not a problem, and boys making mistakes is fine. Girls are better at hiding things to fit in with this idea.” – Jenny

Insight and Depth

This study provides insights into the lived experiences of women diagnosed with ADHD in adulthood.

It highlights the complex interplay of gender, societal expectations, and healthcare systems in the late diagnosis of ADHD in women.

The research reveals the profound impact of late diagnosis on women’s lives, including mental health struggles, academic difficulties, and challenges in relationships and self-perception.

The study also sheds light on the inadequacies in post-diagnosis support and the need for specialized psychological interventions for women with ADHD.

Strengths

This study had several methodological strengths, including:

• The study used a relatively large sample size for qualitative research, allowing for a diverse range of experiences to be captured.
• The use of in-depth narrative interviews allowed for rich, detailed accounts of participants’ experiences.
• The study included participants from various age groups and backgrounds, providing a broad perspective on the issue.
• The research addressed an important gap in the literature by focusing on women’s lived experiences of late ADHD diagnosis.
• The analysis considered intersectional factors such as ethnicity and socioeconomic background.

Limitations

This study also had several methodological limitations, including:

• The sample was primarily composed of university students, which may limit the generalizability of findings to women from different educational backgrounds.
• All participants had been diagnosed within two years of the interview, which may not capture long-term impacts of late diagnosis.
• The study relied on retrospective accounts, which may be subject to recall bias.
• The research was conducted in England, UK, and findings may not be generalizable to other cultural or healthcare contexts.

Implications

The findings of this study have several important implications:

1. There is a need for increased training and awareness among healthcare professionals about how ADHD presents in women and girls.
2. Diagnostic processes and referral pathways for ADHD need to be improved to ensure timely diagnosis.
3. Post-diagnosis support, including specialized psychological therapies and medication management, needs to be strengthened.
4. There is a need for more inclusive and gender-sensitive ADHD assessments and diagnostic criteria.
5. The impact of late diagnosis on mental health and life outcomes highlights the importance of early identification and intervention for ADHD in girls and women.
6. The intersectionality of gender, ethnicity, and ADHD needs to be further explored and considered in both research and clinical practice.

Conclusion

This study provides crucial insights into the experiences of women diagnosed with ADHD in adulthood.

It highlights the significant impact of late diagnosis on women’s lives and the challenges they face in seeking diagnosis and support.

The research underscores the need for increased awareness, improved diagnostic processes, and better post-diagnosis support for women with ADHD.

Future research should continue to explore the experiences of diverse groups of women with ADHD and evaluate interventions designed to address the unique needs of this population.

Understanding and addressing the complexities of ADHD in women is essential for improving outcomes and quality of life for this often overlooked group.

References

Primary reference

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

Other references

Attoe, D. E., & Climie, E. A. (2023). Miss. Diagnosis: a systematic review of ADHD in adult women. Journal of attention disorders, 27(7), 645-657. https://doi.org/10.1177/10870547231161533

Chronis‐Tuscano, A. (2022). ADHD in girls and women: a call to action–reflections on Hinshaw et al.(2021). Journal of Child Psychology and Psychiatry, 63(4), 497-499. https://doi.org/10.1111/jcpp.13574

Gershon, J., & Gershon, J. (2002). A meta-analytic review of gender differences in ADHD. Journal of attention disorders, 5(3), 143-154. https://doi.org/10.1177/10870547020050030

Stenner, P., O’Dell, L., & Davies, A. (2019). Adult women and ADHD: On the temporal dimensions of ADHD identities. Journal for the Theory of Social Behaviour, 49(2), 179-197. https://doi.org/10.1111/jtsb.12198

Young, S., Adamo, N., Ásgeirsdóttir, B. B., Branney, P., Beckett, M., Colley, W., … & Woodhouse, E. (2020). Females with ADHD: An expert consensus statement taking a lifespan approach providing guidance for the identification and treatment of attention-deficit/hyperactivity disorder in girls and women. BMC psychiatry, 20, 1-27. https://doi.org/10.1186/s12888-020-02707-9

Keep learning

Suggested Socratic questions for a college class to discuss this paper:

1. How might societal expectations and gender roles contribute to the late diagnosis of ADHD in women?
2. What are the potential long-term consequences of late ADHD diagnosis for women’s mental health and life outcomes?
3. How can healthcare systems be improved to better identify and support women with ADHD?
4. What role does intersectionality play in the diagnosis and treatment of ADHD in women?
5. How might the experiences of women with late-diagnosed ADHD differ across various cultural contexts?
6. What ethical considerations should be taken into account when researching and discussing sensitive topics like mental health diagnoses?
7. How can we balance the need for early diagnosis with the risk of overdiagnosis or misdiagnosis?
8. What are the potential benefits and drawbacks of using social media as a source of information about ADHD?
9. How might the experiences of women with ADHD differ from those of men with ADHD, and what implications does this have for treatment and support?
10. What role should schools and educational institutions play in identifying and supporting girls and women with ADHD?