Wanted: ADHD Research on Women & Girls

It is indefensible how little is known about ADHD in women today. Research is nearly non-existent in the way ADHD symptoms change with the hormonal fluctuations of puberty, pregnancy, menopause, and beyond. And experts who study ADHD are deeply concerned — outraged even — about the persistent lack of research on a population that is chronically underdiagnosed and misdiagnosed.

"For decades, girls and women with ADHD have missed out on critical interventions to help manage their ADHD symptoms, primarily because they have largely been left out of ADHD research studies," says Julia Schechter, Ph.D., co-director of the Duke Center for Girls and Women with ADHD. "Females with untreated ADHD have been put at higher risk for depression and anxiety, intimate partner victimization, and risky sexual behaviors resulting in teen and unplanned pregnancies. Research devoted to girls and women with ADHD is not only an issue of equity but of life or death for some."

Here, leading experts weigh in on where research is critically needed to guide accurate diagnosis and effective treatment of ADHD in females.

ADHD Research Priority: Defining Sensitive and Precise Screening Tools

Julia Schechter, Ph.D., co-director of the Duke Center for Girls and Women with ADHD

There are numerous research topics related to girls and women with ADHD that deserve thorough investigation. Three specific areas of research that span the life course include:

1. Developing more sensitive and precise screening tools that can better identify girls and women who may have ADHD and require comprehensive evaluation. Many screening tools — particularly those that are freely available — ask raters to report on overt behaviors that align with DSM-5 criteria. Yet, this approach may not be as effective for girls and women. Females with ADHD often compensate for and "mask" their symptoms, making it difficult for observers to rate how frequently a symptom is occurring or whether it is present at all. Research can also focus on developing additional prompts that could be incorporated into existing tools to help raters consider how symptoms may present differently in girls and women (e.g., more likely to be hyperverbal rather than hyperactive). Once developed, these gender-sensitive tools need to be free to use, easy to implement, provide gender or sex-based norms, and be interpretable by those without specialty mental health backgrounds (e.g., teachers, pediatricians).

2. Investigating the role of hormones in ADHD symptom expression in girls and women. This research should examine hormonal levels across the reproductive lifespan including puberty onset, menstrual cycle, pregnancy, postpartum period, and menopause, and post-menopause.

3. Assessing the degree to which girls and women with ADHD require additional or unique treatment approaches. For example, studies can investigate the efficacy of ADHD medication type and dose for girls and women and whether medication effectiveness might interact with hormone levels. With regard to behavioral treatments, research questions might include whether additional modules of CBT for ADHD or behavioral parent training potentially targeting emotion dysregulation could enhance the effectiveness of these psychosocial interventions. In addition, research can explore whether there are certain treatment delivery formats, such as group therapy (vs. individual therapy), that might be more effective for girls and women with ADHD.

[Join Our Call for Greater Research on Women with ADHD]

ADHD Research Priority: Why ADHD Exacts a Greater Toll on Women

Ellen Littman, Ph.D., clinical psychologist and co-author of Understanding Girls with ADHD

The overarching research question is: Why does ADHD exact a far greater toll on women? Why have researchers refused to explore the dramatic sex/gender differences in outcomes — and how can we compel researchers to care?

Here is the most urgent research needed to improve care for females:

• Studies that will increase recognition and understanding of the widest continuum of presentations, complex trajectories, hormonal mediation, cumulative mood-based impairments, and severity of outcomes.
• How do cycling hormones impact all aspects of female behavior and impairment —including PMS and PMDD (premenstrual dysphoric disorder), and the postpartum, perinatal, and menopause stages?
• To what degree do isolation, shame, and despair lead to self-harm and earlier mortality in females?
• How can we identify symptoms earlier in girls?

These findings will provide a basis for revised, inclusive diagnostic criteria and rating scales to assess internalizing symptoms, functional impairments, masking, and symptom proliferation after puberty.

ADHD Research Priority: Understanding the Core Symptoms of ADHD in Women

Maggie Sibley, Ph.D., psychologist, and researcher at the University of Washington School of Medicine

• What are the core symptoms of ADHD in girls and women across the lifespan?
• What is the typical trajectory of onset for ADHD in girls and women?
• What are the key points of intervention for women with ADHD (in terms of times in their lives and domains of impairment)?

[Survey: How Does Your Menstrual Cycle Impact Your ADHD Symptoms?]

ADHD Research Priority: The Impact of Hormonal Fluctuations on Women with ADHD

J.J. Sandra Kooij, M.D., Ph.D., founder, and chair of the European Network Adult ADHD

• Why do some women feel better with oral contraceptives and others feel depressed?
• How do hormones interact with neurotransmitters, such as dopamine, in women?
• What is most helpful for women with PMDD: an antidepressant, increased stimulant dosage in the last week of the cycle, taking birth control pills, or a progesterone antagonist? Same for perimenopausal women with ADHD: Which treatment would be best?
• Why do women with ADHD have higher rates of polycystic ovary syndrome, which is associated with fertility problems and hormonal disturbances, and primary ovarian insufficiency, which is associated with early-onset menopause?

ADHD Research Priority: Sexual and Reproductive Health for Females with ADHD

Lotta Borg Skoglund, M.D., Ph.D., author, associate professor at Uppsala University, Department for Women's and Children's Health, principal investigator at GODDESS ADHD, and author of ADHD Girls to Women

• Are negative sexual and reproductive outcomes and functional somatic symptoms more prevalent in females with ADHD compared to females without ADHD and how are they influenced by age at diagnosis and ADHD treatment?
• What daily life challenges do females with ADHD experience, and are negative sexual and reproductive outcomes and functional somatic symptoms related to low daily life functioning?
• What barriers do females with ADHD face regarding their sexual and reproductive health?
• How are cyclic variations of hormones during the menstrual cycle or the use of hormonal contraceptives related to:
  • ADHD symptom levels
  • Use of ADHD medication
  • Comorbid and functional somatic symptom levels
  • The effects of ADHD medication

ADHD Research Priority: Treatment Efficacy for Women with ADHD

Kathleen Nadeau, Ph.D., author of Still Distracted After All These Years

• ADHD, mood, and menses: Following adolescent and young adult women through several monthly menstrual cycles to report issues related to mood, focus, memory, and emotional regulation.
• Better DSM profile: Conducting a large-scale survey of high school girls, female college students, and adult women with ADHD to tell us their biggest struggles so that, at the very least, the next updated Diagnostic and Statistical Manual of Mental Disorders (DSM) can incorporate these features for females.
• Efficacy of treatment: Asking women with ADHD to rate the effectiveness of treatment with stimulant medication, psychotherapy, group therapy, and lifestyle changes—sleep, exercise, and stress-busting activities.

ADHD Research Priority: The Transition Points That Predict Impairment Versus Resilience for Girls

Stephen Hinshaw, Ph.D., distinguished professor of psychology at the University of California, Berkeley, and author of Straight Talk About ADHD in Girls: How to Help Your Daughter Thrive

• What are the transition points — psychological, family- or school-related, community-wide — that predict impairment versus resilience for girls with ADHD as they transition through adolescence to adulthood?
• What are the pros and cons of social media-related promotion of ADHD information for women, leading to valid diagnosis and treatment?
• What are the pros and cons of self-reported screenings, with the potential for receiving mail-order stimulants?
• What are the strategies and supports that help teen girls and women with ADHD thrive?

ADHD Research Priority: Gender Differences in ADHD

Dawn K. Brown, M.D., owner/CEO of ADHD Wellness Center and Mental Healthletics™

• Gender differences between the presentation and coping mechanisms of girls and women with ADHD compared to boys and men.
• The adverse long-term outcomes of untreated or inadequately managed ADHD in women, including academic underachievement, unemployment, relationship difficulties, inappropriate treatment, and increased risk of substance abuse and mental health disorders.
• How society's expectations of gender roles e.g., cultural norms around femininity, such as the pressure to be organized and focused, may influence ADHD presentations and exacerbate the challenges faced by women with ADHD
• How fluctuations in hormone levels across the menstrual cycle and during pregnancy can impact ADHD symptoms in women.
• How the combination of  ADHD and hormonal-related conditions (e.g., PMS, PMDD, and PCOS) can lead to an overlooked diagnosis and can complicate treatment in women.
• Recognizing and addressing comorbid conditions in women with ADHD, such as depression, anxiety, and eating disorders.
• How ADHD can significantly affect academic, professional, and financial success in women.
• The interplay between ADHD symptoms, parenting stress, and family dynamics of women with ADHD who are parents of children with ADHD.
• How stigma, lack of awareness, and gender bias continuously contribute to delays in diagnosing ADHD in women.

ADHD Research Priority: The Impact of Perimenopause and Menopause on ADHD Symptoms

Jeanette Wasserstein, Ph.D., clinical assistant professor of psychiatry, at the Icahn School of Medicine at Mount Sinai

An ADDitude survey found that an enormous number of women are diagnosed with ADHD during the perimenopausal and menopausal years and that those who were previously diagnosed experienced a worsening of symptoms. These observations correlate with a period of significant underlying hormonal changes. Since ADHD is a neurodevelopmental disorder thought to be typically present during the childhood or teen years, this apparently 'new onset' or worsening of ADHD implies an important role for sex hormones in the expression of some ADHD symptoms.

Such observations also imply that there may even be two types of women who are diagnosed with ADHD during this period: Those who were borderline ADHD their whole lives but did not meet criteria until their symptoms worsened and those who are entirely 'new onset.' Unfortunately, almost no research exists regarding the role of hormones on ADHD during the climacteric. Since women represent 50% of the world's population and all will experience menopause if they live into their 60's the impact of perimenopause and menopause on ADHD symptoms is an enormously unrecognized and important topic in global female health.

ADHD Research Priority: Diagnostic and Treatment Gaps for Women of Color

Sharon Saline, Psy.D., clinical psychologist and author of  What Your ADHD Child Wishes You Knew: Working Together to Empower Kids for Success in School and Life

• Addressing diagnostic and treatment gaps for women of color, including common cultural issues and difficulties with access to care.
• Developing tools for earlier detection of ADHD in girls, teens, and women including more effective options for detecting the internalizing, inattentive symptoms.
• Examining the connection between the rise of peri and post-menopausal women and how estrogen and progesterone affect the dopamine and norepinephrine receptors and pathways in the brain.
• Exploring how the socialization and gender identity of women affect the increased accounts of perfectionism, imposter syndrome, and low self-esteem.

ADHD Research Priority: Early Identification of ADHD in Girls and Women

Andrea Chronis-Tuscano, Ph.D., professor at the University of Maryland and director of the UMD ADHD Program and UMD SUCCEEDS College ADHD Clinic

• How can we raise awareness about ADHD in girls and women among parents, teachers, pediatricians, and other healthcare providers so they can be identified earlier and get the help they need?
• How can we support women through the transition to parenthood so that we can help not only them but also their children who are at risk for ADHD?

ADHD Research: Next Steps

• Download: Free Menstrual Cycle Workbook for Women with ADHD
• Read: Why Research Is Needed on Sex Differences in ADHD
• Read: The Fate of Females with ADHD Is Improving Too Slowly

SUPPORT ADDITUDE

Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.