We Demand Attention! A Call for Greater Research on Women with ADHD

May 1, 2024

“Female ADHD isn’t male ADHD-lite. If anything, research indicates that ADHD may be even more impairing for women than it is for men.” — Lotta Borg Skoglund, M.D., Ph.D.

Most of what we know about ADHD stems from research done on men and boys. We know relatively little about ADHD in women, but the research that exists is sobering.

Arguably, women face more impairing ADHD symptoms and more devastating consequences than do men with the condition. Yet, due to gender-based societal expectations and medical bias, they are also more likely to mask or hide their symptoms. Many women avoid seeking help due to overwhelming shame about real and perceived failures. If they do pursue an evaluation, women “often feel they need to prove symptoms for a physician to take them seriously and consider a diagnosis of ADHD.”¹

And so the consequences of untreated ADHD pile up. Research conducted in 2021 found that girls had more visits to a psychiatric care facility prior to ADHD diagnosis, were prescribed non-ADHD medications (e.g., anti-depressants) before and after diagnosis at a higher rate, and they were older than boys at time of referral and at age of diagnosis.² In other words, they remained undiagnosed and untreated for longer than their male counterparts, who are referred for evaluation and diagnosed at significantly higher rates.

Why the gender disparity? Lopsided medical research, in part, perpetuates gender stereotypes and ignores fundamental truths about ADHD in women that could unlock superior care.

“Untreated or inadequately managed ADHD in women can lead to adverse long-term outcomes, including academic underachievement, unemployment, relationship difficulties, inappropriate treatment, and increased risk of substance abuse and mental health disorders,” says Dawn K. Brown, M.D. “Further research regarding these topics is indeed crucial. By conducting in-depth investigations into the gender-specific nuances of ADHD presentation and impact, healthcare professionals, policymakers, and advocates can promote greater awareness, understanding, and tailored support for women with ADHD.”

Addressing Inequities in Health Research

This Women’s Health Month, ADDitude is joining the chorus of medical experts, healthcare advocates, and government agencies calling for gender equality in medical research. Regarding ADHD, we know that roughly 80% of subjects in pivotal early research were boys, and 29% of research studied boys exclusively.¹ As a result, the symptom criteria in the DSM-5 excludes many key characteristics specific to the expression of ADHD in women, such as “decreased self-esteem, more difficulty in peer relationships, increased likelihood of anxiety and other affective disorders,” and more.¹ As Andrea Chronis-Tuscano, Ph.D., notes in a 2022 review, “Our theories and clinical approach to ADHD were largely guided by studies on elementary school-aged boys.”³

The diagnostic criteria fail to reflect the lived experiences of women with ADHD because they have largely been absent from research studies. So those patients are not properly diagnosed and instead left to believe that something is fundamentally wrong with them that can’t be explained or treated.

“For decades, girls and women with ADHD have missed out on critical interventions to help manage their ADHD symptoms,” says Julia Schechter, Ph.D., of the Duke Center for Girls and Women with ADHD. “A primary reason for missing or misidentifying girls and women with ADHD is that they have largely been left out of ADHD research studies. As a result, researchers have conceptualized ADHD mainly based on the male presentation, which has led to many clinicians who assess and treat ADHD being unaware of the different symptom presentations that girls and women may express.”

Girls and women with untreated or undertreated ADHD — or those who have been misdiagnosed with other conditions — have been put at higher risk for an array of negative outcomes including higher rates of depression and anxiety, intimate partner victimization, and risky sexual behaviors resulting in teen and unplanned pregnancies,” Schechter says. They are at double the risk for engaging in self-harm and significantly more likely to attempt suicide.

“Research specifically devoted to girls and women with ADHD is not only an issue of equity,” Schechter adds, “but a life-or-death matter for some girls and women.”

The U.S. Government Prioritizes Research Equity

More broadly, government and research agencies are beginning to recognize the serious consequences of gender bias in health research. In late 2023, First Lady Jill Biden, Ed.D., established the White House Initiative on Women’s Health Research and promptly announced $100 million in funding for women’s health research to be conducted by the Advanced Research Projects Agency for Health (ARPA-H).

“Research on women’s health has always been underfunded, many medical studies have focused on men and left women out, many of the medicine dosages, treatments, medical school textbooks, are based on men and their bodies — and that information doesn’t always apply to women,” Biden said in announcing the funding. “There are big gaps in research on diseases and conditions that only affect women, that disproportionately affect women, or that affect women and men differently.”

The White House Initiative is chaired by Carolyn Mazure, Ph.D., the Norma Weinberg Spungen and Joan Lebson Bildner Professor in Women’s Health Research at Yale University, who will coordinate the Initiative on behalf of the Office of the First Lady and the Gender Policy Council.

The Most Vital Research on Women with ADHD

We know that gaping holes in research have led to real-life risks and impediments for countless women with ADHD. More gender-based studies are clearly needed, but narrowing down the list of research priorities to those with the greatest potential benefit to patients is challenging. From puberty to menopause, and PMDD to age-related cognitive decline, the research need is vast.

“What we need are studies that follow a significant body of women through the lifespan… and that have women self-report on any symptoms or other experiences at the time they are having them, not retrospectively, which is always subject to biased memory and recall,” says Mary V. Solanto, Ph.D., Director of the ADHD Center in the Division of Child and Adolescent Psychiatry at Mount Sinai School of Medicine in New York City.

Solanto was among more than a dozen leading experts that ADDitude consulted in devising the following list of health research priorities for women with ADHD. In addition, ADDitude surveyed 703 readers and asked, “What areas of research would most significantly impact your life as a woman with ADHD?” Their answers helped to inform the following list, which ADDitude will bring to the White House Initiative on Women’s Health Research for consideration.

Check back often for links to detailed information about each of the following research priorities as we release them.

#1: Longitudinal Studies of Sex Differences in ADHD

How and why do ADHD symptoms manifest differently and more intensely in women vs. men?

#2: Studies on the Mental and Physical Health Consequences of Delayed ADHD Diagnoses on Women

What are the long-term health implications of delayed ADHD diagnosis and/or misdiagnosis for women?

#3: Studies Investigating How Hormonal Changes Across the Lifespan Impact ADHD Symptoms in Women

How do fluctuations in estrogen, progesterone, and other hormones from adolescence to post-menopause impact neurotransmitters like dopamine and norepinephrine, which play a crucial role in focus, attention, and mood?

#4: Studies Investigating How Perimenopause and Menopause Impact ADHD Symptoms, and Vice Versa

How do the hormonal changes of perimenopause and menopause uniquely impact women with ADHD, and how can the often-overlapping symptoms of each condition be teased apart for proper diagnosis and effective treatment?

#5: Studies Investigating Why Women with ADHD Experience PMS, PMDD, and PPD at Significantly Elevated Rates

Is there an inherent component of ADHD, or of the interplay between dopamine and estrogen, that makes women with ADHD experience premenstrual syndrome, premenstrual dysphoric disorder, and postpartum depression with greater likelihood and severity than other women?

#6: Studies Exploring Whether ADHD Medication Use is Significantly Protective to Parents During Pregnancy and While Nursing

Do the benefits of ADHD medication use to expectant and new parents outweigh the potential risks to babies who may be exposed to stimulant medications in utero or through breastmilk?

#7: Studies Exploring How ADHD Medication Adjustments During the Monthly Menstrual Cycle Could Improve Outcomes for Women

Could adjusting dosages during menstrual cycle phases – especially increasing an ADHD medication’s dosage during low-estrogen phases – provide more consistent symptom management for ovulating individuals?

#8: Studies on the Long- and Short-Term Implications of Hormonal Birth Control and Hormone-Replacement Therapy Use Among Women with ADHD

Can hormonal birth control be used to safely mitigate the effects of monthly hormonal fluctuations on ADHD symptoms? Can hormone-replacement therapy be used to safely counteract the effects of reduced estrogen on ADHD symptoms in menopause?

#9: Studies Investigating How and Why Comorbid Conditions Like Anxiety, Depression, and Eating Disorders Impact Females with ADHD

Beyond late diagnosis, what other factors contribute to the high prevalence of anxiety, depression, and other comorbid conditions among women with ADHD?

#10: Studies to Identify Early Indicators of Self-Harm, Partner Violence, Substance Abuse, and Other Adverse Outcomes Common Among Women with ADHD

How can we better protect girls and women with ADHD against the unique risks and adverse outcomes that pose a serious threat to their health and wellbeing?

Honorable Mentions:

#11: Studies to Establish the Differentiating Characteristics Between Age-Related Cognitive Impairment and ADHD in Older Women

#12: Studies Investigating the Ways That Gender Roles and Stigma Contribute to Delayed Diagnoses, Missed Diagnoses, and Misdiagnoses Among Women with ADHD, and Women of Color with ADHD, in Particular

#13: Research Into Long-Term Educational and Professional Outcomes for Women with ADHD, Relative to Men with ADHD and to Neurotypical Women

 

*ADDitude is dedicated to honoring gender diversity and fluidity. For the purposes of this reporting, we use the terms “girls” and “women” to refer to individuals assigned female at birth and/or who identify as female.

Sources

¹ 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

² Klefsjö, U., Kantzer, A. K., Gillberg, C., & Billstedt, E. (2021). The road to diagnosis and treatment in girls and boys with ADHD – gender differences in the diagnostic process. Nordic journal of psychiatry, 75(4), 301–305. https://doi.org/10.1080/08039488.2020.1850859

³ 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, and allied disciplines, 63(4), 497–499. https://doi.org/10.1111/jcpp.13574

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