In the Dark: Women and Undiagnosed AD/HD

In the Dark: Women and Undiagnosed AD/HD

Michelle Rodems

Why couldn't I remember the conversations? The details? Why was I the only one who had trouble with this? My questions first began as a result of an incident in the residential area I managed. I had been asked to recall the context and conversations around the situation. But I couldn't - at least not well. I was embarrassed and ashamed.

I had never been a detail person. I always run late. I procrastinated, missed deadlines, lost my keys (and everything else), was easily distracted, interrupted, fidgeted endlessly. All of the symptoms had always been there. Instead of a diagnosis, I was "flighty," "lazy," and "had a big mouth." My challenges became a constant source of jokes. I laughed along and adopted the characterization, knowing I could never do enough or be enough to move beyond this identity.

And then, one of my resident assistants preparing for her wonderful future career in working with children with special needs asked if I could help her. She wanted to practice her diagnostic skills by asking me questions to assess attention deficit hyperactivity disorder. I agreed and ranked highly. On a children's test. It was a start.

Then, I entered into a doctoral program. The first year was terrible. I made it through, but my health, relationships, and self-efficacy suffered terribly. Finally, I went to the doctor. I was diagnosed with AD/HD combined type which means that I have both the inattentiveness of ADD along with the hyperactivity of AD/HD. A simple diagnosis brought relief, frustration, and empowerment.

I was 31. I'm not unusual in being diagnosed late as a woman. Women often have difficulty obtaining an accurate or comprehensive diagnosis. This is largely because the criteria for AD/HD were developed through studies of young boys. In fact, "AD/HD is one of the most highly researched childhood psychiatric conditions, however, less than one percent of that research has focused on the issues of girls, and even less research has addressed women with AD/HD" (Naudeau & Quinn, 2002, p. 32). And while that statistic might be a bit dated, a National Institute of Health study from 2013 confirms that girls and women continue to be underdiagnosed because the criteria remain the same (Quinn & Madhoo, 2014).

While traditional criteria emphasize restlessness, interruption, and hyperactivity, those symptoms more commonly identified with girls and women, such as forgetfulness, disorganization, low self-esteem, anxiety, and demoralization are generally less disruptive behaviors and therefore often go unrecognized (Quinn, 2005). Moreover, "girls are raised to 'internalize' -- to take in and 'own' negative feedback, to apologize, to accommodate, and not to fight back -- in short, to take the blame" (p. 585) and therefore undermine the symptoms themselves. Diagnosis may also be delayed if an individual has the protective influence of a high IQ, a supportive family, relatively good social skills, and no symptoms of conduct disorder (Brown, 1998; Tzelepis, Shubiner, & Warbasse, 1995).

There are severe consequences, though. Girls and women without proper diagnosis report low self-esteem, impaired social relationships, demoralization, often engage in "at risk" behaviors at a greater rate than males, become anxious, depressed and socially withdrawn, and may have poor academic performance and behavioral problems  (Quinn, 2005;  Quinn & Madhoo, 2014). Additionally, girls with AD/HD have high rates of suicide and self-harm during their teenage years (Hinshaw, et al., 2012). Women with AD/HD are at risk for financial crises, never completing college, underemployment, substance abuse, eating disorders and constant stress (Crawford, 2003). Even if a girl or woman is correctly diagnosed with AD/HD, the typical treatment recommendations are based upon studies of boys, rarely taking hormonal fluctuations into account; therefore, girls and women will likely have decreased effectiveness of certain medications or increased symptoms that doctors often do not address.

As in every other way, gender stereotypes and assumptions hurt women from both sides: punishing more "feminine" characteristics with underdiagnosis and punishing more "masculine" coping mechanisms with derisive comments such as "too abrasive" or " too aggressive" or "lacking structure." Moreover, there are those who claim that AD/HD isn't real, or the red herring that AD/HD is over-diagnosed, and thus ignore, stigmatize, and denigrate those with real challenges. Just for reference, I believe it is a real thing and that it's over-diagnosed, largely because our culture lacks positive, accepting space for all neuro-characteristics.

In the six years since my diagnosis, much has changed - mostly for the good. While I often find myself trying to overcompensate for the challenges of AD/HD, or more often for the assumptions of others, I've learned to value what AD/HD has brought to my life.

Because of AD/HD I'm a better problem solver. I'm more compassionate. I'm flexible. I give others the benefit of the doubt. To manage my AD/HD I have learned to become more organized, a good time manager, prompt, and better at details. While I'm still working at it, I'm better at asking for help. I've learned the value of working with others whose strengths balance mine. And I’m really fun. All in all, I'm very, very grateful for neuro-atypicalness.

While I can genuinely laugh about my disorder now, I still have some serious questions:

1. How do we provide support for students who are newly diagnosed with AD/HD (or any other disorder)?

2. How do we provide particular support for women who have or may have AD/HD?

3. How do we destigmatize disorders to support success in all students?

3. What does neurotypical really mean?

4. How do we help students who struggle with certain areas of their lives to understand their value and worthiness regardless of strengths and weaknesses?

My hope is that AD/HD research will become more inclusive of women (and move beyond including primarily those who are White, young boys). My hope is that girls and women gain diagnoses that help them better understand themselves and how to be successful as themselves. My hope is that we as educators provide spaces that are supportive of students who have a variety of neurocharacteristics. And, most of all, I hope that we can help students feel that they are valued and important regardless of their strengths and weaknesses.

References

Brown, T. E. (1998). ADHD in persons with superior IQs: Unique risks. Presented at the 10th Annual CHADD International Conference, New York.

Crawford, N. (2003). ADHD: A women's issue. Psychologists are fighting gender bias in research on attention-deficit hyperactivity disorder. APA Monitor, 34(2), 28. Retrieved from: http://www.apa.org/monitor/feb03/adhd.aspx.

Hinshaw, S. P., Owens, E. B., Zalecki, C., Huggins, S. P., Montenegrow-Nevado, A. J., Schrodek, E., & Swanson, E. N. (2012). Prospective follow-Up of girls with attention-deficit/hyperactivity disorder into early adulthood: Continuing impairment includes elevated risk for suicide attempts and self-injury. Journal of Consulting and Clinical Psychology, 80, 1041-1051.

Nadeau, K. & Quinn, P. (October, 2002). Diagnosing and treating women with AD/HD. Attention@chadd.org, 32-35.

Quinn, P. O. (2005). Treating adolescent girls and women with ADHD: Gender-specific issues. JCLP/In Session, 61, 579-587.

Quinn, P. O. & Madhoo, M. (2014). A review of attention-deficit hyperactivity disorder in women and girls: Uncovering this hidden diagnosis. The Primary Care Companion for CNS Disorders. doi: 10.4088/PCC.13r01596.

Michelle Rodems is Program Manager for Faculty and Graduate Student Professional Development, University of Louisville.

michelle.rodems@louisville.edu

@michellerodems