Adult ADHD: Signs, Symptoms, Types, Treatment

Study: Complex ADHD More Common in Women and Girls, Leading to Later Diagnoses

Nicole Kear — Thu, 30 May 2024 13:20:29 +0000

May 30, 2024

Females are more likely than males to have complex presentations of ADHD, potentially leading to delayed diagnosis and treatment, according to new research published in the Journal of Attention Disorders. The study found that females with ADHD are more likely than males to have inattentive ADHD, are diagnosed at older ages, and have higher rates of anxiety and depression diagnoses both before and after their ADHD diagnoses. ¹

The retrospective observational study was conducted using data from four U.S. health databases. The researchers sought to explore the relationship between sex as well as ADHD subtype and diagnosis timing. They also hoped to assess whether receiving an ADHD diagnosis had an impact on pre-existing diagnoses of depression and anxiety in women and girls, who receive treatment for these comorbidities at higher numbers.

Age of ADHD Diagnosis Rates by Sex and Subtype

The study revealed:

The average age of ADHD diagnosis by gender:
- Females:16 to 29 years
- Males: 11 to 23 years
Across both sexes, the average age of diagnosis by ADHD type:
- Inattentive Type: 17 years to 27 years
- Hyperactive impulsive Type: 10 years to 20 years
Females were substantially more likely than males to be diagnosed with inattentive ADHD

How Mood Disorders Fit Into the Diagnostic Picture

Females were twice as likely as males to have depression or anxiety diagnoses and treatments in the year before their ADHD diagnosis.
Females were more likely than males to receive new diagnoses or treatments for depression or anxiety in the year following an ADHD diagnosis.
The number of females with pre-existing depression or anxiety diagnoses with symptoms that did not continue after their ADHD diagnosis was higher than the number of males. In these cases, ADHD may have been misdiagnosed as anxiety or depression.
Patients with inattentive ADHD were more likely to receive a prior diagnosis of depression or anxiety:
- Inattentive ADHD: 13% to 18% (depression) and 17% to 26% (anxiety)
- Hyperactive impulsive ADHD: 5% to 12% (depression) and 9% to 20% (anxiety)

Repercussions of Delayed Diagnosis

The study’s finding that females are diagnosed five years later than males, on average, together with other key data points lead researchers to conclude that diagnoses in females tend to occur “only once ADHD symptoms become more severe,” and underscores the importance of addressing this gap in health equity.

The consequences of undiagnosed ADHD are dire, especially for women.

“Women who live undiagnosed until adulthood experience significant negative outcomes in the areas of self-esteem, social interaction, and psychosocial wellbeing beginning in childhood and continuing into adulthood,” concluded the authors of a systematic review of research published in March 2023. “Women in these studies engaged in less task-oriented coping and more emotion-oriented coping and often turned to recreational drugs, alcohol, nicotine, and sex to self-medicate for symptoms of undiagnosed ADHD.” ²

A female ADDitude reader explains the lived experience of late diagnosis this way: “I have lived with the misleading belief that I was a loser, lazy, incompetent. What are the long-term impacts of these self-defeating beliefs?”

The Complicating Presence of Mood Disorders

The connection between ADHD and mood disorders, including depression, is well-established. According to a recent study in BMJ Mental Health: ³

People with ADHD are 9% more likely to have MDD
An MDD diagnosis increases the risk for ADHD by 76%

These findings are echoed in the responses to a recent ADDitude survey of 6,810 adults, which found that 72% reported having anxiety and 62% having reported depression.

In addition to the over-representation of mood disorders among individuals with ADHD, previous research has documented that women in general are twice as likely as men to suffer from MDD and General Anxiety Disorder (GAD).

While rates of mood disorders are unequivocally higher among women with ADHD than either men with ADHD or women without the condition, the new study lends credence to what many women have reported anecdotally: They are also more likely than men to have ADHD initially misdiagnosed as depression or anxiety.

“Because of stigma and thoughts related to gender role presentations, when females do present with ADHD symptoms, it can be thought that it’s more likely due to anxiety or depression, because those are presentations that people are used to seeing in females early on,” explained Dave Anderson, Ph.D., in the ADDitude webinar “ADHD Then and Now: How Our Understanding Has Evolved.” “So, people say, ‘She’s distracted because she’s anxious or sad,’ not because she has ADHD. That’s something that we’re actively trying to fight, even in clinician bias.”

The new study, and research like it, helps shed light on the unique toll exacted on women by ADHD. More investigation is desperately needed, explains Dawn K. Brown, M.D., in the ADDitude article, We Demand Attention! A Call for Greater Research on Women with ADHD.

“Further research regarding these topics is indeed crucial,” Brown explains. “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.”

Read on to learn about the Top 10 research priorities detailed in ADDitude’s groundbreaking, cross-platform initiative : We Demand Attention! A Call to Action for Greater Research on Women with ADHD.

We Demand Attention: A Call for Greater Research on ADHD in Women

Intro: Top 10 Research Priorities

Sources

¹ Siddiqui, U., Conover, M. M., Voss, E. A., Kern, D. M., Litvak, M., & Antunes, J. (2024). Sex Differences in Diagnosis and Treatment Timing of Comorbid Depression/Anxiety and Disease Subtypes in Patients With ADHD: A Database Study. Journal of Attention Disorders, 0(0). https://doi.org/10.1177/10870547241251738

² 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

³ Meisinger, C. & Freuer, D., (2023) Understanding the Causal Relationships of Attention Deficit/Hyperactivity Disorder with Mental Disorders and Suicide Attempt: A Network Mendelian Randomisation Study. BMJ Mental Health. doi.org/10.1136/bmjment-2022-300642

Duke Project Narrows Top Research Priorities for, and by, Women with ADHD

Anni Layne Rodgers — Fri, 24 May 2024 02:03:42 +0000

May 24, 2024

The most urgent and important areas of medical research on women with ADHD include the following:

Hormonal Influences: Understanding how hormones impact ADHD presentation and treatment in girls and women
Aging and Cognitive Decline: Investigating the connection between aging, cognitive decline, and ADHD in post-menopausal women with ADHD
Misdiagnosis and Late Diagnosis: Exploring the unique harms of misdiagnosis or later-in-life diagnosis of ADHD in women
Executive Function Challenges: Studying how executive functioning challenges (e.g., organization, prioritizing, time management) manifest in girls and women with ADHD

These research priorities emerged from the interim results of a survey conducted by the Duke Center for Girls & Women with ADHD last month. The online survey asked respondents to rank 46 unique health research according to their personal importance, revealing broad consensus among women of various ages and socioeconomic backgrounds. To date, 1,350 people have completed the survey.

For women with ADHD in their 20s, 30s, and 40s, the top research priority was understanding the role of hormones in ADHD symptoms and treatment. Women aged 51 and older prioritized research on the interplay between ADHD, aging, and cognitive decline after menopause.

These findings complement those of ADDitude’s recent survey of 705 women with self-reported ADHD, 69% of whom said their quality of life would be most significantly impacted by research on “how the hormonal changes of perimenopause and menopause affect ADHD symptoms.” The survey respondents also expressed frustration by the historical lack of recognition of ADHD in women and girls.

“Surely I’m not seeing something that the actual scientists can’t,” wrote one ADDitude reader in response to an Instagram post calling for greater research on hormones and ADHD. “We know that dopamine levels are directly correlated with estrogen levels. It seems obvious that the Estrogen Rollercoaster we live on would have a huge impact on our symptoms, no?”

Among post-menopausal women who completed the Duke Center’s survey, their research priorities shifted to also include studies on the psychological, emotional, and long-term health implications of late diagnosis, including:

The impact of ADHD on girls’ and women’s beliefs about themselves
Specific considerations for therapy for women who were diagnosed with ADHD later in life

“I was an older woman (60+) when I realized that ADHD is real and that I have it,” wrote one respondent to ADDitude’s survey on research priorities. “I have lived with the misleading belief that I was a loser, lazy, incompetent… What are the long-term impacts of these self-defeating beliefs? Where does one this old go for help this late in life?”

Another woman lamented clinicians’ failure to understand, diagnose, and treat women for ADHD. “Most people going through menopause have not been allowed to have ADHD according to the DSM,” the woman said in response to an Instagram post calling for greater research on menopause in women with ADHD. “When we were kids, we had to be male and physically hyperactive [to get an ADHD diagnosis]. Born female before the late ‘80s, you had to be a sodding unicorn to be diagnosed. Seeing as we’ve only been in the club for a few years, why would anyone think to have looked?”

Quantifying ADHD Research Needs

Of the 1,350 survey responses included in the Duke Center’s early results, 1,128 came from adult women who self-identified as living with ADHD. The majority of these women were White, lived in mostly urban or suburban regions, and reported that they did not experience significant financial hardship. A third of the sample were of “childbearing age” (i.e., ages 24-40), more than half were in their 40s and 50s, and 37% were 60 and older. A small minority (2%) were “young adult” women (ages 18-23).

The majority (N=429, 38%) of the sample identified as not yet starting menopause, 35% (N=392) were perimenopausal or in menopause, and 285 respondents (25%) identified as being post-menopausal.

Research Priorities for Girls with ADHD

More than 400 survey respondents identified as being a parent of a daughter with ADHD. The Duke Center used their responses as a proxy for the top child-specific research priorities for girls with ADHD, which included the following:

Investigating the reasons why girls with ADHD experience heightened rejection sensitivity
Exploring how teachers’ understanding of ADHD presentation in girls can be different from boys, and how this unique presentation impacts identifying and supporting girls with ADHD in school
Understanding the impact of social development delays in girls with ADHD
Studying the challenges of identifying, supporting, and advocating for girls with ADHD in education settings
Researching effective learning environments, teaching approaches/school accommodation, and strategies for girls with ADHD

Other Notable Findings

Women in their 20s and 30s were the only respondents to rank “unique medication concerns for girls and women with ADHD” as one of their top priorities. They also identified “workplace accommodations and strategies that are most helpful for women with ADHD” as especially important, a theme that was not prioritized as highly by other groups.

Post-menopausal women were in the only group to rank “impact of ADHD on girls’ and women’s beliefs about themselves” as one of their top four priorities.

Given that 90% of the sample of adult women with ADHD identified as White, and 95% identified as non-Hispanic, the researchers were unable to examine whether different races or ethnicities prioritized themes differently. Additional recruitment of more diverse groups is under way.

Research by the Duke Center for Girls & Women with ADHD is supported by a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award (EASCS-26478), which aims to learn from girls and women living with ADHD — as well as from the people who love and support them — about the research areas that are the most important to them. The center’s mission is to advance education about the unique needs of girls and women with ADHD across the lifespan.

ADHD Symptoms in Adult Women: Related Reading

We Demand Attention: A Call for Greater Research on ADHD in Women

Top 10 Research Priorities According to ADDitude Experts, Readers

Live Webinar on June 27: AuDHD Guidance: Why Autism Is So Difficult to Diagnose in Women and Girls with ADHD

Carly Broadway — Thu, 23 May 2024 15:11:21 +0000

Register to reserve your spot for this free webinar and webinar replay ►

Not available June 27? Don’t worry. Register now and we’ll send you the replay link to watch at your convenience.

ADHD and autism share many symptoms. Yet the Diagnostic and Statistical Manual of Mental Disorders (DSM) allowed for ADHD and autism to be diagnosed in the same person only 11 years ago. Before 2013, the DSM did not recognize or allow for a dual diagnosis. Since then, research and clinical understanding of AuDHD have evolved.

However, we still don’t have an evidence-based, standardized approach to diagnosing and supporting adults, women, and gender-diverse individuals with AuDHD. Clinical consensus, stakeholder perspective, and increasing empirical research suggest that ADHD and autism are spectrum conditions that present differently across development and genders, making accurate diagnoses and treatment both challenging and vital.

This presentation will explain the ways in which ADHD and autism overlap and how they can present differently in children and adults — and across genders. In this webinar, you will also learn:

About how AuDHD is diagnosed in children and adults
How autism can look different from childhood to adulthood and across genders
About the association between autism and gender diversity
Why autism is so easily missed and misdiagnosed, especially in girls and women, and the consequences of that
About the myths and misinformation about autism in adults and girls and women
About what your medical and mental health providers need to know and how you can help them make an accurate diagnosis
Future directions in diagnosis and treatment

Have a question for our expert? There will be an opportunity to post questions for the presenter during the live webinar.

Meet the Expert Speaker

Dr. Karen Saporito is a licensed clinical psychologist who has been in private practice for over 20 years. She provides care to a wide range of clients with varying issues, but has a particular interest and specialty in diagnosing and supporting children and adults with ADHD and autism spectrum disorder. She is passionate about educating medical and mental health providers, as well as clients, about the different presentation of girls and women with neurodevelopmental disorders. Karen has been a member of APSARD for several years and serves on the APSARD Adult ADHD Guidelines Committee and the Diversity Committee.

ADHD & Autism: More Resources

Sign Up: The Clinicians’ Guide to Differential Diagnosis of ADHD
Self-Test Video: What Does Autism Look Like in Adults?
Read: Signs of Autism in Women with ADHD
Read: An Open Conversation with Temple Grandin, Autism Advocate

Certificate of Attendance: For information on how to purchase the certificate of attendance option (cost $10), register for the webinar, then look for instructions in the email you’ll receive one hour after it ends. The certificate of attendance link will also be available here, on the webinar replay page, several hours after the live webinar. ADDitude does not offer CEU credits.

Closed captions available.

“How I Restarted My Life After a Post-Menopausal ADHD Diagnosis”

Nathaly Pesantez — Wed, 22 May 2024 09:45:30 +0000

The First 50 Years

Why am I like this? Why is everything such a struggle?

These are the questions that would plague me as soon as I’d wake up. There would be an avalanche of tumbling thoughts accompanied by fruitless resolutions to do better today than I did yesterday and most of the days of the past 50 years of my life.

Shoulds and have-tos mounted before I even sat up in bed. Procrastination began immediately. Today, I’d proclaim, I’ll start getting ready as soon as I have my coffee. But… I didn’t. Merely getting into the shower was a battle. By the time I was ready, I was already running behind. Again.

Most of the days in my life looked like this. I’m an adult, I’d tell myself. I’ve been an adult for decades. So why can’t I ever manage to plug my intentions into my motor cortex and just DO things without an epic struggle through resistance?

As Brené Brown told Tim Ferriss: “Midlife… is not a crisis. It’s a slow, brutal unraveling.” For most of my life, cycles of procrastination and panic-induced productivity got me through things — more or less. But when I reached midlife, burnout was increasingly winning these battles. My old constant companion, anxiety, was just sort of there, hanging out like the parasite it was. Cranked up to 11, yes, but what good was it if it could no longer motivate me like it used to?

The Midlife Shift

Today, when I wake up, there’s no wave of anxiety, no dread of getting out of bed. I pour a cup of coffee and sit at my window, watching the birds. I take my time in the morning. My one rule for early mornings is to not engage in screen time right after waking. I sit and sip and let my mind wander.

[Download This Free Guide to Menopause and ADHD]

After journaling and meditating, it’s time for breakfast. I get ready at my own pace. My morning routine takes a long time, but I can afford to take my time. I schedule my days to allow it, because this is what my mind and body want. This sets the tone for the day.

Then comes work. I step gently through my to-do list, taking breaks when I need to. I switch tasks, working for a short block at each. The pacing is enough to prevent boredom and frustration, while still giving each task enough time to make some progress. I’m so much more consistent than I used to be; I make a little progress on each project each day. No more default procrastination, unable to start a task until I’m right up against — or past — an appointment or a deadline, then relying on intense stress to push through.

What changed?

An ADHD Diagnosis After Menopause

I was diagnosed with ADHD at the age of 52. Like many women with ADHD, I was diagnosed after menopause, when a drop in hormones makes symptoms much more apparent. Despite no medical professional ever spotting it before, my ADHD, as my diagnostician put it, “isn’t subtle.” He had to walk me through a meltdown over the phone when I couldn’t get through the questionnaire for my evaluation.

I’ll never forget the sense of gratification and relief I felt as I looked at his report. I read his clinical judgments for the degree of impairment for each symptom: “Severe.” “Severe.” “Severe.” Or sometimes, “Moderate to severe.”

[We Demand Attention: A Call for Research on ADHD and the Menopausal Transition]

After learning what having ADHD really meant — being wired for executive functioning difficulties — I was finally able to be compassionate and accepting toward the way I operated. My struggles and limitations started to make sense.

Starting Over

I tried a thought experiment: What if I start to regard all my supposed flaws and weaknesses — my absentmindedness, my inability to focus, the way I was always running late, how desperately hard it was to start any task — as features I simply have to work with, with no moral condemnation attached to them?

This was a major reversal from the way I had previously moved through my life. This meant starting over with a mindset that I hadn’t had since almost before my earliest memories. And with that, everything shifted.

I started to schedule around my energy levels, instead of what I thought I “should” be able to do. For example, I stopped thinking of 40-hour (or more) work weeks as somehow being optimal. Instead, I asked myself what I could do with part-time hours, so that I could live without constant burnout.

By understanding executive dysfunction and the constant fatigue of working with a very messy high-octane brain, I radically dialed back my demands of myself. I learned to work within my window of tolerance.

I stopped thinking of my energy limits as temporary obstacles, to be dismissed or plowed through. This was my wiring. It’s not going to change. This is what I have to work with.

Midlife ADHD and Menopause: Next Steps

Free Download: Women, Hormones, & ADHD
Read: ADHD Impairment Peaks in Menopause
Read: Hormonal Changes & ADHD — A Lifelong Tug-of-War

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.

How to Dodge Social Isolation in Retirement

Shreya Rane — Thu, 16 May 2024 08:11:10 +0000

Loneliness is a real and painful risk as we get older. We lose a spouse, miss our far-away children and grandchildren, and lose touch with friends who have moved away or slipped into poor health.

Being an older adult with ADHD is a double whammy. In addition to older-age loneliness, we struggle with maintaining old friendships and making new friends in our later years. Building and maintaining relationships requires skills that are often impaired by ADHD — initiating contact, making and noting plans on a calendar, and showing up on time. Many older people with ADHD have told me, “I talk too much,” or “I annoy everyone by interrupting, but if I don’t interrupt, I’ll forget what I wanted to say.”

What can we, as older adults with ADHD, do to fight the looming loneliness of our 60s, 70s, 80s, and beyond? Think structure, strategies, and support.

[Self-Test: How Severe Is Your Loneliness? Take This Quiz]

Prevent Loneliness with Structure, Strategies, and Support

Find an environment with structure. Adults with ADHD function best within structure. Consider moving to a community that plans activities designed for older adults. You won’t need to organize anything, and no one will be upset if you run a few minutes late. Some senior centers also provide many of the same kinds of planned activities.
Develop strategies to keep in touch with people. I often encourage older adults with ADHD to make it a daily habit to reach out to a friend or relative. Send a text, message friends on social media, or make a phone call. Set up a daily walk with a neighbor. It will keep you socially connected and provide exercise and exposure to nature and sunshine.
Interact with other neurodivergent people your age. Socializing with a group of people who get and accept you can be emotionally supportive and validating. It may also improve your mood and decrease your social anxiety.
Need help making changes and decisions that will help you re-establish ties with friends and family? Working briefly with an ADHD coach or therapist may be the catalyst you need to reconnect with your social world.

How to Deal with Loneliness: Next Steps

Download: Free Guide to ADHD in Older Adults
Read: “I Feel Utterly, Hopelessly Alone.”
Read: The Loneliest Generation
eBook: ADHD After 40

Kathleen Nadeau, Ph.D., is the author of Still Distracted After All These Years. (#CommissionsEarned)

#CommissionsEarned As an Amazon Associate, ADDitude earns a commission from qualifying purchases made by ADDitude readers on the affiliate links we share. However, all products linked in the ADDitude Store have been independently selected by our editors and/or recommended by our readers. Prices are accurate and items in stock as of time of publication.

“11 Things I’d Tell My Younger Self”

Nathaly Pesantez — Tue, 14 May 2024 08:02:42 +0000

When I was diagnosed with ADHD in my 40s, I looked back at my life with a new set of eyes. My heart broke for the child I was. Messiness, time blindness, compulsive hyperfocus, emotional dysregulation, and rejection sensitivity were all things I’d internalized as my personal failings and default personality traits rather than what they really were: ADHD symptoms.

For most of my life, I did not have the knowledge I needed to understand myself and counterbalance pervasive negative messaging that made me feel inherently defective and ashamed. Post-diagnosis, it still takes a lot of effort to notice and rectify harmful, anti-neurodivergent messaging from those close to me and from wider society.

I’ve been on a journey to drain my seemingly bottomless pool of shame, and it’s not a linear process. There are days I revert to child-me, hiding in my bathroom, feeling small, powerless, and voiceless. What helps me is to speak to that little girl and tell her all the things I wish I heard growing up — things that would have helped me break the difference = shame equation that crystallized in my young mind.

Dear Younger Self: What All Girls with ADHD Need to Hear

1. You are strong. Strength is not the absence of fear. Strength is having fears and going outside your comfort zone anyway. It takes strength and courage to show your vulnerability. Your differences, challenges, and even your perceived blunders are signs of strength and determination!

2. There’s no singular “right way” of doing things. There are many ways to do things and many paths to get you where you want to go.

[Read: What Are the Consequences of Late-Life ADHD Diagnoses for Women?]

3. Some things are super hard, and you can ask for help if you need it. Asking for help doesn’t mean you are a failure, or that you are weak or a burden to others. I know you want to push through all on your own, because people always tell you to “try harder” or “have more discipline,” which makes you feel guilty. To be honest, that’s bad advice because they don’t know how hard you’re trying. I really need you to not be so hard on yourself, to learn to ask for help – everyone struggles with some things in life and it’s OK. And when you find yourself struggling, remember that you have plenty of other strengths and skills to celebrate!

4. Trust yourself! Your intuition – it is trustworthy. Your feelings – they are valid. Your voice – you don’t need permission to use it, and it’s OK to struggle to express yourself verbally; it’s something that takes practice and you’ll get better at it.

5. Shame tells us to hide. Don’t. Look it in the eye, say no, thank you, and tell it to leave. I know you try hard to be a “good girl” and make your parents proud, but it’s OK to break out of the mold and color outside the lines. You have a right to claim space. You have things to show and teach the world! Let people know the real you!

6. You are not alone in your feelings. If you feel lonely, insecure, or misunderstood, chances are others do, too! Sometimes you can have a lot of feelings, and it can be tough to contain them all. When you share how you feel, it helps you make sense of your emotions. And you give others the chance to help you, and to share their vulnerabilities.

[Read: 42 Raw Confessions from Women with ADHD]

7. It’s a beautiful thing to be a sensitive soul. You feel things deeply, you tune into people’s emotions, and wear your heart on your sleeve. That’s not a bad thing, though it does mean you can feel hurt and rejected when others don’t treat you the way you want to be treated. Just remember people have different levels of sensitivity. Some people struggle to be sensitive, while you have easy access to this quality and the gifts it presents, like being creative and empathetic.

8. Don’t try to be like everyone else. It’s normal to want to fit in with others, especially when you are growing up. But people love you for who you are. They love your light, your creativity, your uniqueness. Continue being your playful self!

9. You don’t need to be perfect to be loved. You are enough. Just the way you are. Enjoy the process rather than focusing on the results. Embrace imperfection — it will teach you to let go of self-criticism. It’s totally OK to be imperfect and to fail, and you will still be loved and accepted for who you are.

10. I am proud of you. Your value is not in what you achieve, but in who you are as a person. Your heart and your spirit. I am proud of who you are. I am proud of you for always trying things even though they may be hard for you.

11. I love you!

Spoiler alert: I still struggle and I don’t have it all figured out. I still need to repeat these nuggets of advice to myself each day. But the imaginary exercise of speaking to my younger self has helped me to understand where my limiting beliefs came from and to choose the words that help change my narratives.

Unlearning ingrained thought patterns is hard work. But repeating these things to myself and being my own advocate has made me kinder to myself and more authentically me. I hope it helps you, too.

I also made a comic about this very topic! You can read it in full here.

Healing Your Inner Child: Next Steps

Read: “Dear 10-Year-Old Me, Just Be You.”
Join ADDitude’s Call! We Demand Attention on Sex Differences in ADHD
Read: Stop the Cycle of Shame for Girls with ADHD
Read: How to Raise a Self-Confident Daughter

Illustrations courtesy of Juliette Yu-Ming Lizeray.

42 Raw Confessions from Women with ADHD

Nathaly Pesantez — Sun, 12 May 2024 08:41:41 +0000

ADDitude asked its readers: What do you wish the world knew about being a girl or woman with ADHD? More than 600 of you responded.

We Demand Attention on Self-Harm, Intimate Partner Violence, and Substance Abuse Among Women with ADHD

Nicole Kear — Thu, 09 May 2024 14:20:44 +0000

What We Know

The lives of girls and women with ADHD are jeopardized by exponentially higher rates of self-harm, suicidality, and intimate partner violence, as compared with their neurotypical counterparts or with neurodivergent boys and men.

“ADHD in girls portends continuing problems through early adulthood that are of substantial magnitude across multiple domains of symptomatology and functional impairment,” write the authors of the Berkeley Girls ADHD Longitudinal Study (BGALS) follow-up study.¹ “The sheer range of negative outcomes is noteworthy; the most striking include the high occurrences of suicide attempts and self-injury in the ADHD sample, confined to the childhood-diagnosed combined type.”

What We Know About Self-Harm

“Girls with combined-type ADHD are 2.5 times more likely to engage in non-suicidal self-injuring behavior than are their neurotypical peers, and 3 to 4 times more likely to attempt suicide,” said Stephen Hinshaw, Ph.D., lead author of the BGALS study, in an ADDitude webinar titled, “Girls and Women with ADHD.” It’s important to note, Hinshaw says, that self-harm is a “potent indicator” of future suicide attempts.

This is an arresting statistic, particularly considering how self-harm and suicidality have spiked in adolescent girls in general. The most recent CDC Youth Risk Behavior Survey (YRBS) report found that 1 in 10 girls has attempted suicide, and 1 in 3 of girls seriously considered suicide during the past year, which is an increase of nearly 60% from a decade ago.

Research suggests that neurodivergent girls face a significantly higher risk for self-harm than do neurodivergent boys, or neurotypical people of any gender. A 2020 study in European Child & Adolescent Psychiatry found that the rate of self-harm was four times greater in females than it was in males (8.7% vs 2.2%).²A 2022 ADDitude survey found reports of self-harm among 18% of girls with ADHD versus 9% of boys with ADHD.

The correlation between teen girls with ADHD and self-harm is so strong that a 2021 study published in Child and Adolescent Mental Health proposed that all teen girls treated for self-harming behavior should be screened for ADHD:³ A full 83% of teen patients admitted to the hospital for self-harm were girls, the study found.

Indeed, early diagnosis and treatment of ADHD is critical to mitigating the risk of self-harm. “Girls and women with untreated ADHD are at double the risk for engaging in self-harm and significantly more likely to attempt suicide,” says Julia Schechter, Ph.D., of the Duke Center for Girls and Women with ADHD.

What We Know About Intimate Partner Violence

Low self-esteem, high rejection sensitive dysphoria (RSD), and social skill deficits put women and girls with ADHD at heightened risk for intimate partner violence (IPV). A study published in the Journal of Abnormal Child Psychology found that: ⁴

Girls with ADHD were five times more likely to be victims of physical intimate partner violence than non-ADHD girls (30% vs. 6%)
Greater ADHD symptom severity in childhood was associated with increased risk for physical victimization

“Findings indicate that in young women, childhood ADHD is a specific and important predictor of physically violent victimization in their intimate relationships,” write the authors of the study. “Given the devastating impact of intimate partner violence, additional research on how to empower females with ADHD in their social and romantic relationships is greatly needed.”

What We Know About Substance Use

The connection between SUD and ADHD has been well-established through research. We know that:

People with ADHD are three times more likely to develop an SUD then those without⁵
25% of adults with SUD have ADHD⁶
SUD is often more severe in individuals with ADHD⁷

Among the general population, we know that teen girls are more likely to use substances than are teen boys. According to the CDC’s YRBS:

Alcohol: 27% of teen girls reported drinking in the last month vs 19% of boys
Vaping: 21% of girls reported vaping in the last month vs 15% of boys
Illicit drugs: 15% of girls reported ever using illicit drugs vs 12% of boys
Misuse of prescription opioids: 15% of girls reported ever misusing opioids vs 10% of boys

That said, studies on the prevalence of SUD among girls and women with ADHD have resulted in mixed findings. An elevated risk of substance use was found in a large-scale study led by Joseph Biederman, M.D.,⁸however no such association was found in the BGALS follow-up.

Most recently, researched at the University of Minnesota conducted a study investigating how ADHD symptoms may influence substance use in women and men, and it found a stronger association between alcohol use and ADHD for young adult women than for young adult men.⁹

“The current study confirms that ADHD-associated risk for adult substance problems is consistently greater in magnitude for women,” the authors of the study write. “The presence of adult ADHD increases risk for substance problems in women more than men.”

What We Don’t Know

No research exists on the relative efficacy of interventions that may reduce the risks for self-harm, suicidality, intimate partner violence, and substance use among girls and women with ADHD. Without fully understanding where these threats begin and how they escalate, we cannot devise and adjust solutions.

The BGALS follow-up study found elevated risks of self-harm and suicidality only among girls with combined-type ADHD, and not among those with inattentive symptoms alone, which leads researchers to speculate that impulsivity is associated with higher risk. Researchers also posit that psychosocial factors, such as the teen’s environment, contribute to the likelihood of self-harm. Longitudinal research is needed, however, to confirm this.

“What are the transition points — psychologically, family or school-related, community-wide — that predict impairment vs. resilience for girls with ADHD as they transition through adolescence to adulthood?” asks Hinshaw. “What are the strategies and supports that teen girls and women with ADHD find most helpful in self-advocacy and thriving?”

In the British Journal of Psychiatry,¹⁰ Hinshaw and doctoral student Sinclaire O’Grady call for longitudinal research on long-term correlated outcomes, such as the development of borderline personality disorder, as well as research into the intergenerational transmission of risk for negative outcomes in the children of women with ADHD.

Further research is needed to answer the following questions:

What are the specific predictors and mediators of the high risk for self-harm in girls and women with ADHD?
Does screening self-harming teens for ADHD reduce the occurrence of self-harm?
What, exactly, makes early adulthood a time of heightened risk for substance use issues, specifically for women with ADHD?
What are the impacts of ADHD treatment on intimate partner violence victimization?
What psychosocial interventions, specific to girls and women with ADHD, may mitigate risk of intimate partner violence victimization?

Why It Matters

Researching suicidality, self-harm, intimate partner violence, and substance abuse among women with ADHD will, quite literally, save lives.

A study led by Russell Barkley, Ph.D., published in the Journal of Attention Disorders, found that life expectancy was 13 years lower for patients with combined-type ADHD diagnosed in childhood and with persistent symptoms, relative to control children.¹¹

However, because of the severely limited number of females in the study, the findings are largely not relevant. No major study has investigated the impact of ADHD on life expectancy specifically in women.

With dramatically higher rates of self-harm and suicidality, as well as intimate partner violence, this research is desperately needed to protect women from bodily harm, as well as devastating emotional consequences.

What ADDitude Readers Tell Us

Feelings of loneliness, RSD, emotional dysregulation, anxiety, and low self-worth exert a crushing emotional burden — and prompt some readers to harm themselves, to abuse substances, and to maintain toxic relationships.

“I made poor choices that led to abuse,” says Debs, an ADDitude reader in the United Kingdom. “I’ve taken substances to make the pain less, and I have self-harmed to try to take away the pain.”

“The inner turmoil just seems to get louder and louder and more difficult to turn down, which leads to unhealthy ways of coping like self-harm to help manage the stress,” shares Laura, an ADDitude reader in Texas.

“I abuse cannabis,” explains ADDitude reader Elizabeth, in the United Kingdom.

“Sometimes I feel worthless and want to self-harm because of RSD, assuming I’m not loved by my loved ones.”

“I get myself in relationships that aren’t good for me as I’m just happy that somebody finally loves me despite my flaws,” explains ADDitude reader Annika in Germany. “Self-harm comes into play when I feel like a failure because the relationship is rocky, and I get invalidated or criticized.”

“I constantly feel like I’m failing, which makes the thoughts about self-harm pop up often, although I haven’t given in to those for a while now,” says Lizzy in the Netherlands.

“I drink a lot right now,” says Nicole, an ADDitude reader in Washington. “I know it is unhealthy, but it is the only way for me to cope.”

“I have a history of self-harm, which was sometimes brought on my intense feelings of worthlessness and loneliness,” shares an anonymous ADDitude reader.

What ADHD Experts Say

The long-term ravages of underdiagnosed and undertreated ADHD in women are dire — a matter of life and death in some cases. To develop effective interventions, research is essential.

“There is a critical need for studies into how increasing degrees of isolation, shame, and despair lead to self-harm and earlier mortality, exploring the relationships to early chronic trauma, impulsivity, poor self-care,” says Ellen Littman, Ph.D. “Research must respond to outcomes signaling such a significant public health crisis.”

“Too little is known about later-adult outcomes of females with ADHD,” write Hinshaw and O’Grady. “Overall, we contend that the extraordinarily high risk for self-harm incurred by girls with ADHD as they mature requires a shift in clinical perspective.”

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

Self Harm & Intimate Partner Violence: Related Resources

Suicide &Crisis Lifeline: Call or Text 988
988lifeline.org
National Sexual Assault Helpline: 1-800-656-HOPE
National Substance Abuse Helpline: 1-800-662-HELP
Stop Bullying

Related Reading

We Demand Attention: A Call for Greater Research on ADHD in Women

Intro: Top 10 Research Priorities

Sources

¹SP, Owens EB, Zalecki C, Huggins SP, Montenegro-Nevado AJ, Schrodek E, Swanson EN. Prospective follow-up of girls with attention-deficit/hyperactivity disorder into early adulthood: continuing impairment includes elevated risk for suicide attempts and self-injury. J Consult Clin Psychol. 2012 Dec;80(6):1041-1051. doi: 10.1037/a0029451. Epub 2012 Aug 13. PMID: 22889337; PMCID: PMC3543865.

²Ohlis, A., Bjureberg, J., Lichtenstein, P. et al. Comparison of suicide risk and other outcomes among boys and girls who self-harm. Eur Child Adolesc Psychiatry 29, 1741–1746 (2020). https://doi.org/10.1007/s00787-020-01490-y

³ Ward JH, Curran S. Self-harm as the first presentation of attention deficit hyperactivity disorder in adolescents. Child Adolesc Ment Health. 2021 Nov;26(4):303-309. doi: 10.1111/camh.12471. Epub 2021 May 3. PMID: 33939246.

⁴ Guendelman MD, Ahmad S, Meza JI, Owens EB, Hinshaw SP. Childhood Attention-Deficit/Hyperactivity Disorder Predicts Intimate Partner Victimization in Young Women. J Abnorm Child Psychol. 2016 Jan;44(1):155-66. doi: 10.1007/s10802-015-9984-z. PMID: 25663589; PMCID: PMC4531111.

⁵Wilens T. E. (2004). Attention-deficit/hyperactivity disorder and the substance use disorders: the nature of the relationship, subtypes at risk, and treatment issues. The Psychiatric clinics of North America, 27(2), 283–301. https://doi.org/10.1016/S0193-953X(03)00113-8

⁶Charach, A., Yeung, E., Climans, T., & Lillie, E. (2011). Childhood attention-deficit/hyperactivity disorder and future substance use disorders: comparative meta-analyses. Journal of the American Academy of Child and Adolescent Psychiatry, 50(1), 9–21. https://doi.org/10.1016/j.jaac.2010.09.019

⁷Wilens, T. E., & Morrison, N. R. (2011). The intersection of attention-deficit/hyperactivity disorder and substance abuse. Current opinion in psychiatry, 24(4), 280–285. https://doi.org/10.1097/YCO.0b013e328345c956

⁸Biederman J, Monuteaux MC, Mick E, Spencer T, Wilens TE, Klein KL, Price JE, Faraone SV. Psychopathology in females with attention-deficit/hyperactivity disorder: a controlled, five-year prospective study. Biol Psychiatry. 2006 Nov 15;60(10):1098-105. doi: 10.1016/j.biopsych.2006.02.031. Epub 2006 May 19. PMID: 16712802.

⁹Elkins IJ, Saunders GRB, Malone SM, Wilson S, McGue M, Iacono WG. Differential implications of persistent, remitted, and late-onset ADHD symptoms for substance abuse in women and men: A twin study from ages 11 to 24. Drug Alcohol Depend. 2020 Jul 1;212:107947. doi: 10.1016/j.drugalcdep.2020.107947. Epub 2020 Feb 27. PMID: 32444170; PMCID: PMC7293951.

¹⁰O’Grady SM, Hinshaw SP. Long-term outcomes of females with attention-deficit hyperactivity disorder: increased risk for self-harm. Br J Psychiatry. 2021 Jan;218(1):4-6. doi: 10.1192/bjp.2020.153. PMID: 33019955; PMCID: PMC7867565.

¹¹ Barkley, R. A., & Fischer, M. (2019). Hyperactive Child Syndrome and Estimated Life Expectancy at Young Adult Follow-Up: The Role of ADHD Persistence and Other Potential Predictors. Journal of Attention Disorders, 23(9), 907-923. https://doi.org/10.1177/1087054718816164

We Demand Attention on Understanding Why Comorbid Conditions Like Anxiety and Depression Uniquely Impact Women with ADHD

Anni Layne Rodgers — Mon, 06 May 2024 23:17:18 +0000

What We Know

Women with ADHD suffer from serious comorbid conditions with more frequency and severity than do men with ADHD or the neurotypical population.

A staggering 93% percent of women with ADHD report at least one related diagnosis, according to a 2023 ADDitude survey. The most common comorbidities among women were:

Anxiety (73%)
Depression (63%)
PTSD or c-PTSD (23%)
Migraines (22%)
Sleep disorder (18%)
Eating disorder (15%)
PMDD or severe PMS (15%)
Obsessive compulsive disorder (11%)
Sensory processing disorder (10%)
Learning disorders (9%)
Autism spectrum disorder (8%)
Substance use disorder (7%)

A separate ADDitude survey of 1,148 women with ADHD found that 57% of those who had given birth suffered from postpartum depression (PPD) with at least two-thirds reporting symptoms of mood swings, crying spells, and feelings of worthlessness, shame, guilt, or inadequacy.

These self-reported comorbidity rates are higher than those found in most other studies. But even those scientific research reports contain shocking findings:

59% of women diagnosed with ADHD have an additional psychiatric disorder compared to only 5% of the women without ADHD¹
Women with ADHD are five times more likely to experience anxiety than are women without ADHD²
Women with ADHD face 2.5 times higher risk for major depression than do their neurotypical counterparts³
Among women with ADHD, depression has an earlier age of onset, lasts longer, presents with more severe symptoms, a higher rate of suicidality, and a greater likelihood of requiring psychiatric hospitalization compared to women without ADHD⁴
Up to 46% of women with ADHD experience PMDD⁵
25% of people with ADHD who give birth will suffer from postpartum anxiety — compared to approximately 10% of women without ADHD. In addition, 17% of women with ADHD who give birth will experience PPD — at least a 24% increase over the general population⁶
Girls with combined type ADHD are three to four times more likely to attempt suicide than are their neurotypical peers, and they are more than twice as likely to engage in self-harm⁷

“Our findings of extremely high rates of cutting and other forms of self-injury, along with suicide attempts, show us that the long-term consequences of ADHD in females can be profound,” says Stephen Hinshaw, Ph.D., director of the Berkeley Girls and ADHD Longitudinal Study (BGALS) — the only longitudinal study on females with ADHD conducted to date.

What We Don’t Know

Why are women with ADHD at greater risk for developing comorbid conditions and why do these conditions appear to take a greater toll on this group? What factors — neurological, biological, social, emotional, and others — possibly put women with ADHD at such relatively high risk for comorbid conditions? These questions remain unanswered due to an absence of research.

A 2023 study found that sleep disorders impact a higher percentage of women with ADHD than men with ADHD,⁸ and it implored researchers to investigate the root causes of this gender-specific discrepancy. This pattern is repeated in other conditions as well. We know women with ADHD are more likely than men to suffer from mood disorders, anxiety, eating disorders, borderline personality disorder, and countless other co-existing conditions, but we don’t understand why — or how to best help them — because there is simply no research to guide clinicians.

Longitudinal and double-blind studies are needed to probe questions like the following:

Why do nearly three-quarters of women with ADHD report living with anxiety and more than half with depression? Why are these comorbidity rates so much higher than those seen in men with ADHD?
Are comorbid conditions more often co-occurring or secondary to ADHD in women?
Do years spent undiagnosed and untreated for ADHD cause such emotional turmoil and low self-esteem that secondary anxiety commonly develops? Is secondary depression similarly a common byproduct of a missed ADHD diagnosis? What about eating disorders? Sleep disorders? Substance use disorder?
Do clinicians commonly dismiss or misinterpret signs of ADHD in women and misdiagnose them with internalizing disorders, and vice versa?
Is there a biological, neurological, or genetic connection between ADHD and these comorbid conditions that cause them to co-exist so commonly in women?
Does having a single ADHD comorbidity increase the likelihood that a woman will have others?
Does acute sensitivity to hormonal fluctuations put women with ADHD at higher risk for PMS, PMDD, and PPD? What about migraines?
How can we better screen girls and young women with ADHD for the comorbid conditions we know they experience most frequently and those associated with the worst long-term outcomes?
Why isn’t it standard practice for clinicians to perform ADHD evaluations on the girls and young women who have been referred to them for internalized symptoms of emotional dysregulation, anxiety, and low mood?
Does early, effective treatment for ADHD reduce the likelihood that women will experience symptoms of comorbid conditions as they age?

“At age 12, I was diagnosed with general anxiety disorder, major depression, and OCD,” wrote one ADDitude reader. “When I got my ADHD diagnosis at age 23 and went on medication, almost all my problems with depression and anxiety disappeared. I realized that my untreated ADHD was a likely factor in every other problem I’d faced. Addressing the root cause nearly fixed all the other issues.”

Why It Matters

Clinicians who do not understand the overlap of ADHD and other conditions in women cannot begin to accurately piece apart and diagnose those symptoms or prescribe effective treatments. Until research exists on complex ADHD and its comorbidities, women will continue to suffer inaccurate or incomplete diagnoses with adverse effects touching every aspect of life.

As covered in Part One of this We Demand Attention package, ADHD is missed more than it is diagnosed in girls and young women. Their internalized symptoms are either misinterpreted as signs of another condition, like anxiety or a mood disorder, or they receive only a partial diagnosis. Typically, inappropriate and ineffective treatment follows, which only increases the likelihood for additional or more severe mental health problems.

“ADHD does not happen in a vacuum,” notes Nelson M. Handal, M.D., founder of the Dothan Behavioral Medicine Clinic. “Its effects are far more impairing when the condition goes undiagnosed, untreated, or improperly treated.”

“Many women seeking treatment for mood and emotional problems may have unrecognized ADHD,” states the 2023 research paper “Miss. Diagnosis: A Systematic Review of ADHD in Adult Women.” “Higher rates of comorbidities such as depression and eating disorders in females with ADHD may make diagnosis more difficult. As well, physicians may have more difficulty separating ADHD from its comorbidities, potentially clouding ADHD symptoms and leading to delayed diagnosis in females.”⁹

In an ADDitude survey of 703 readers, 59% said that research on comorbidities like depression and anxiety in girls and women with ADHD would positively impact their lives. Greater study, they argue, would help ensure that more women receive an accurate diagnosis early in life — the effects of which cannot be overstated.

“I was diagnosed with depression first, but I couldn’t stick to treatment because nothing worked. When I finally got my ADHD diagnosis, it was life-saving,” wrote one ADDitude reader. “Maybe I wouldn’t have developed depression if I didn’t have untreated ADHD for decades.”

“I was recently diagnosed with ADHD after years of struggling with anxiety and depression. It turns out that ADHD (with a side of PTSD) has been the underlying problem all along — 38 years in the making,” wrote another survey respondent.

“I initially had generalized anxiety disorder and depression in high school,” wrote an ADDitude reader. “I was shy of 30 when I finally received my ADHD diagnosis. It finally made sense. My anxiety symptoms were ADHD symptoms. I overthink and overreact, not because I am afraid but because I am wired differently. My ADHD diagnosis is a life-changer.”

In addition, it is critical to understand how ADHD affects females with chronic illnesses that require reliable daily medication, timely medical appointments, and consistent self-care.

What ADDitude Readers Tell Us

While research on ADHD comorbidities is needed across the board, ADDitude readers are desperate for studies on autism, trauma, sensory sensitivities, and other comorbid conditions with strong ties to ADHD but very little study to date. Readers also urge greater research into hormonal influences on ADHD and comorbid conditions.

“I would like to see research into AuDHD (autism and ADHD) in girls and women — primarily as it affects racialized minorities/POC!” wrote one ADDitude reader in Canada. “I’m Black and, as a POC, and I struggled for years in higher ed and workplaces due to this absence of medical research supporting our existence as research subjects… With dedicated investment and deep investigation, I’m confident that public and private awareness will organically follow.”

“I have ADHD, anxiety, depression, and PTSD. My symptoms can shift daily or pile on top of each other,” said an ADDitude reader with multiple diagnoses. “Sometimes my ADHD symptoms get challenged. This triggers my PTSD, which then increases my anxiety and causes depression. They all feed off each other, and it never ends.”

“I would like to see more autism research, but also generally anything that might help undo/uncover all the countless misdiagnoses that have been assigned to women/AFAB,” wrote an ADDitude reader in Utah. “With a child, I’m all for investing in the accuracy of future diagnoses, but as a late-diagnosed AuDHD person, I don’t want anybody to be left behind.”

“I’d like to see research on how women’s hormonal changes impact behavior, mental health, physical health, and other aspects of well-being throughout their lifespan,” wrote an ADDitude reader in North Carolina. “This would be critical to understanding how ADHD, autism, depression, and many other conditions affect women and girls differently than men.”

“I’d like to see the treatment options for those with eating disorders and ADHD better understood, particularly when sensory issues and food allergies are present from birth,” wrote an ADDitude reader in California.

What ADHD Experts Say

Experts agree that women with ADHD face a disproportionately large risk for comorbid conditions with adverse outcomes, and that clinicians could do much more to identify and treat these women at a young age.

“Women with ADHD are more likely to have comorbid conditions such as depression, anxiety, and eating disorders,” said Dawn Brown, M.D. “Recognizing and addressing the potential for these concurrent conditions is essential for comprehensive treatment and improved outcomes.”

“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,” said Julia Schechter, Ph.D. “These girls and women with untreated ADHD are at double the risk for engaging in self-harm and significantly more likely to attempt suicide.”

Next Steps

Watch a free replay of the 2020 ADDitude webinar titled “Why ADHD Is Different in Women: Gender-Specific Symptoms and Treatments” lead by Ellen Littman, Ph.D.
See ADDitude’s full library of free, on-demand webinar replays on ADHD and its comorbid conditions.
Consider joining a research study on women with ADHD and related conditions.
- CHADD offers a database of ADHD-related research studies that is searchable according to region.
- The U.S. Food & Drug Administration maintains a database of clinical trials for women that is searchable by condition and location.
- ResearchMatch is a free and secure tool that helps match willing volunteers with eligible researchers and their studies at institutions across the United States.
- ClinicalTrials.gov is a U.S. government database of clinical trials that is searchable by condition, treatment, or location.Consider joining a research study on women with ADHD and related conditions

We Demand Attention: A Call for Greater Research on ADHD in Women

Intro: Top 10 Research Priorities

Sex Difference in ADHD
The Health Consequences of Delayed ADHD Diagnoses on Women
How Hormonal Changes Impact ADHD Symptoms in Women
How Perimenopause and Menopause Impact ADHD Symptoms, and Vice Versa
The Elevated Risk for PMDD and PPD Among Women with ADHD
The Safety and Efficacy of ADHD Medication Use During Pregnancy and While Nursing
How ADHD Medication Adjustments During the Monthly Menstrual Cycle Could Improve Outcomes for Women
The Long-Term and Short-Term Implications of Hormonal Birth Control and Hormone-Replacement Therapy Use Among Women with ADHD
How and Why Comorbid Conditions Like Anxiety, Depression, and Eating Disorders Uniquely Impact Women with ADHD
Early Indicators of Self-Harm, Partner Violence, and Substance Abuse Among Girls and Women with ADHD

Sources

¹Andersson, A., Garcia-Argibay, M., Viktorin, A., Ghirardi, A., Butwicka, A., Skoglund, C., Bang Madsen, K., D’onofrio, B.M., Lichtenstein, P., Tuvblad, C., and Larsson, H. (2023). Depression and Anxiety Disorders During the Postpartum Period in Women Diagnosed with Attention Deficit Hyperactivity Disorder. Journal of Affective Disorders. https://doi.org/10.1016/j.jad.2023.01.069

²MGH Center for Women’s Mental Health (2023, October). “ADHD as a Risk Factor for Postpartum Depression and Anxiety.” https://womensmentalhealth.org/posts/adhd-as-a-risk-factor-for-pmad/

³Biederman, J., Ball, S. W., Monuteaux, M. C., Mick, E., Spencer, T. J., McCREARY, M., Cote, M., & Faraone, S. V. (2008). New insights into the comorbidity between ADHD and major depression in adolescent and young adult females. Journal of the American Academy of Child and Adolescent Psychiatry, 47(4), 426–434. https://doi.org/10.1097/CHI.0b013e31816429d3

⁴Biederman, J., Ball, S. W., Monuteaux, M. C., Mick, E., Spencer, T. J., McCREARY, M., Cote, M., & Faraone, S. V. (2008). New insights into the comorbidity between ADHD and major depression in adolescent and young adult females. Journal of the American Academy of Child and Adolescent Psychiatry, 47(4), 426–434. https://doi.org/10.1097/CHI.0b013e31816429d3

⁵Obaydi, H., & Puri, B. K. (2008). Prevalence of Premenstrual Syndrome in Autism: A Prospective Observer-Rated Study. The Journal of International Medical Research, 36(2), 268–272. https://doi.org/10.1177/147323000803600208

⁶Andersson, A., Garcia-Argibay, M., Viktorin, A., Ghirardi, L., Butwicka, A., Skoglund, C., Bang Madsen, K., D’onofrio, B.M., Lichtenstein, P., Tuvblad, C., Larsson, H. (2023). Depression and Anxiety Disorders During the Postpartum Period in Women Diagnosed with Attention Deficit Hyperactivity Disorder. J Affect Disord, 325:817-823. https://doi.org/10.1016/j.jad.2023.01.069

⁷Hinshaw, S.P., Owens, E.B., Zalecki, C., Huggins, S.P., Montenegro-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. J Consult Clin Psychol, 80(6):1041-1051. https://doi.org/10.1037/a0029451

⁸Ahlberg, R., Garcia-Argibay, M., Taylor. M., Lichtenstein, P., D’Onofrio, B.M., Butwicka, A., Hill, C., Cortese, S., Larsson, H., Du Rietz, E. (2023) Prevalence of Sleep Disorder Diagnoses and Sleep Medication Prescriptions in Individuals with ADHD Across the Lifespan: A Swedish Nationwide Register-Based Study. BMJ Ment Health. (1):e300809. https://doi.org/10.1136/bmjment-2023-300809

⁹Attoe, D.E., Climie, E.A. (2023) Miss. Diagnosis: A Systematic Review of ADHD in Adult Women. J Atten Disord. (7):645-657. https://doi.org/10.1177/10870547231161533

We Demand Attention on the Benefits and Risks of Hormonal Contraception and Hormone Replacement Therapy for Women with ADHD

Nicole Kear — Mon, 06 May 2024 07:18:03 +0000

What We Know

Hormonal contraceptives (HC) may help stabilize the fluctuations in estrogen and progesterone that occur during the menstrual cycle and in perimenopause that are particularly impairing for neurodivergent women, however research has found a correlation between some types of oral HC use and higher rates of depression in women with ADHD.

The impact of sex hormones, including estrogen and progesterone, on ADHD symptoms in women has only recently become the subject of scientific inquiry. A recent study found that various ADHD symptoms wax and wane depending on the menstrual phase. Researchers found that estrogen has a protective effect for both cognition and emotional regulation, and that ADHD symptoms tend to worsen when estrogen drops. ¹

These findings are reflected in the lived experience of ADDitude readers. In a recent survey, a full 98% of respondents reported experiencing hormone-related changes in cognitive function and/or mood, including changes in focus, attention and memory as well as emotional regulation.

Oral HC, or birth control pills, typically contain synthetic estrogen and progesterone. In addition to preventing pregnancy, they are often used to treat heavy menstrual bleeding, painful cramps, irregular periods, polycystic ovarian syndrome, and acne. In addition, some clinicians prescribe oral HC to stabilize hormone levels in women and treat premenstrual syndrome (PMS) and/or premenstrual dysphoric disorder (PMDD), which impact two-thirds of women with ADHD, according to an ADDitude survey.

Until recently, the implications of oral HC use for women with ADHD were entirely uninvestigated, however a recent study published in Journal of the American Academy of Child and Adolescent Psychiatry (JAACP),² revealed that:

Women with ADHD who used combined oral contraceptives (COC) or progestogen-only pills (POP) had more than five times the risk for depression compared to women without ADHD who did not use hormonal contraceptives.
This elevated risk was not found among women with ADHD who used non-oral HCs, such as hormonal IUDs or progestogen implants. These women had the same risk of developing depression as did their non-ADHD counterparts.
This elevated risk was also not found among women without ADHD who used oral HC.
Women taking HC for medical reasons (heavy bleeding, irregular periods, PCOS) were twice as likely to develop depression as those who took it primarily to prevent pregnancy. Taking HC for medical reasons was more common in women with ADHD than it was in women without ADHD.

“Systemic hormonal contraception contains progestins that inhibit the ovulatory cycle and thereby ‘smoothens’ the hormonal profile, but it may also mimic the negative mood symptoms experienced from natural progesterone during the luteal phase of the menstrual cycle,” explains Lotta Burg Skoglund, M.D., Ph.D., a lead author on the study. “However, most women do not experience these negative mood effects and, somewhat counterintuitively, some progestins may even alleviate symptoms of PMDD.”

An ADDitude survey of nearly 5,000 women revealed that 93% of respondents aged 45 and older experienced elevated and aggravated ADHD symptoms in perimenopause and/or menopause. More than half of these women said their ADHD symptoms — including feelings of overwhelm, procrastination, and memory issues — had a “life-altering impact” in menopause. We know that for hormone replacement therapy (HRT) can effectively alleviate common symptoms of menopause, such as hot flashes, mood lability, and insomnia, and it may offer other benefits.

“Studies show that HRT, if initiated within 10 years of menopause, reduces all-cause mortality and risks of coronary disease, osteoporosis, and dementia,”³explains Jeanette Wasserstein, Ph.D., in the ADDitude article, “Menopause, Hormones & ADHD: What We Know, What Research is Needed.” “Overall, recent research suggests that the risk in using any type of HRT is lower than previously reported in literature.”

Research has revealed heightened risk for some cancers associated with some forms of HRT, so Wasserstein highlights that a thorough consultation with a medical provider is critical before beginning HRT.

What We Don’t Know

No studies have probed the implications of HRT use for climacteric women with ADHD and we know very little about the potential benefits or risks of HC for women with ADHD.

“ADHD is a common illness, but few studies have looked at the association of hormonal stages and ADHD symptoms,” write the authors of a systematic review of sex hormones, reproductive stages, and ADHD published in Archives of Women’s Mental Health.⁴ “Notably, we did not find any studies investigating ADHD symptoms in other female physiological states such as pregnancy or menopause or looking at the response of patients with ADHD to hormonal treatments such as hormone replacement therapy.”

The small puzzle pieces of existing data are surrounded by questions. Why, for example, did women with ADHD on oral HC experience far higher rates of depression while those on hormone implants or IUDs did not? Until more research is conducted, researchers are left to theorize.

“It may be that, when taking oral birth control, women with ADHD might be extra susceptible to forget to take their birth control pills or may take them irregularly, causing hormonal fluctuations that may destabilize mood,” explained Skoglund in her ADDitude webinar, “The Emotional Lives of Girls with ADHD.” Also, a woman’s hormonal levels will fluctuate during assumed pill-free intervals.”

Some anecdotal reports suggest the use of oral HC, which minimize hormonal fluctuations, may improve ADHD symptoms in some women.

“I was surprised and amazed by the extent to which my focus and my executive functioning improved since I started hormonal birth control,” said Silvia, an ADDitude reader in Italy. “I totally reshaped my life: I decided to start coaching people again, joined a company and am thinking of going back to university again to obtain a second degree. I don’t experience mood swings anymore and I feel less exposure to RSD.”

These anecdotal reports offer promise. But without research, clinicians lack a solid foundation of data to make treatment recommendations.

“We need to find out why some women feel better with oral contraceptives and others feel depressed,” says J.J. Sandra Kooij, M.D., Ph.D. “It is about hormone sensitivity, and how hormones interact with neurotransmitters such as dopamine in women with ADHD, but exactly what drives this difference is still unclear.”

Given a total lack of research studies, there is virtually no reliable science regarding the risks and benefits of HRT for peri- and post-menopausal women. Among the many questions that remain unanswered are the following:

Does HRT improve symptoms of ADHD in climacteric women?
Does HRT pose unique risks, either physiological or psychological, to women with ADHD?
Does HRT impact the efficacy of stimulant or non-stimulant medication for ADHD?
Are there women with ADHD for whom oral HCs mitigate ADHD symptoms? If so, what is known about this patient profile that can help clinicians make treatment recommendations? What types of oral HCs are most effective and least disruptive for this group?
What factors account for the increase in depression in some women with ADHD on HC? If oral contraceptives are taken daily as indicated, does the risk decrease?
Does oral or non-oral HC impact the efficacy of stimulant or non-stimulant medication for ADHD?

Why It Matters

Hormonal contraceptives are among several first-line treatments for PMS and PMDD, which impact women with ADHD with heightened frequency and intensity.⁵ Symptoms of these mood disorders are frequently debilitating, and include suicidal ideation. A comprehensive understanding of possible treatment options for these women could significantly improve quality of life and reduce the risk of self-harm.

Reliable, well-tolerated contraception is also critical for girls and women with ADHD because they are six times more likely to give birth as teenagers compared with women without this diagnosis, according to a recent study led by Skoglund. ⁶

These dramatically heightened rates of unplanned pregnancy were also found in the groundbreaking Berkeley Girls with ADHD Longitudinal Study, led by Stephen P. Hinshaw, Ph.D., professor of psychology at the University of California, Berkeley. “By the time they reached their mid to late 20s, about 43% of the BGALS participants in the ADHD group had one or more unplanned pregnancies,” Hinshaw told ADDitude.

Research has found that experiencing unwelcome psychological side effects is the most commonly reported reason for the discontinuation of hormonal contraception, a decision which could have far-reaching implications.⁷

“Unwanted pregnancy undermines women’s schooling, health and social status and is directly linked to the negative psychosocial impact of ADHD on health, autonomy, academic performance, and quality of life,” Skoglund says. “Averting underage parenthood through effective contraception methods will likely benefit women’s education, empowerment, health and quality of life, their families, offspring, and society from a health economic perspective and have broad and public health benefits, extending far beyond the targeted group.”

What ADDitude Readers Tell Us

Hormonal contraceptives earn mixed reviews from readers, some of whom find them helpful in balancing mood and reducing ADHD symptoms; others report that HC use increases in anxiety, irritability and depression, among other intolerable side effects.

“Hormonal birth control affected me so negatively that I went off of it. It was highly disruptive to my mood and overall wellbeing,” says Jen, a reader in Utah. “I don’t mess with the hormones — even though they love to mess with me.”

“I had an IUD for 7 years. Within a few days, I could not believe the change in my mood. I felt more emotionally even and steady than I had felt in years,” shares ADDitude reader Anne.

“My PMDD was exacerbated by any hormone preparation, including the pill. The low-dose Mirena was an absolute nightmare for me,” says Nicole, an ADDitude reader. “I’m so hesitant to try anything to manage impending menopause, which has me ever more on edge, and I’m not sure yet how to advise my teen on these matters.”

“I started birth control due to PMDD. The mini-pill has been fantastic for my ADHD. I have fewer hormonal fluctuations,” says Karen, an ADDitude reader in Idaho. “I can finally rely on myself to be functional every day (as long as I get enough sleep and take my ADHD meds).”

“I detested the combined pill. It wrecked my mental health, and gave me dangerous migraines),” offers another ADDitude reader. “I was still disorganized, unmotivated with the added bonus of all the physical and mental downsides of the combined pill.”

ADDitude readers often report improved brain fog, memory issues, and mood swings while on HRT, though some say their doctors resist prescribing hormone replacement.

“As I approach menopause, my ADHD symptoms have worsened exponentially — severe memory and concentration problems, plus brain fog, mood swings, acne, sleep problems, fatigue. I’ve been barely able to work for almost a year now,” says Jennifer, an ADDitude reader in California. “I begged my doctor for HRT, but they won’t prescribe it since I’m not technically in menopause yet. They put me back on the pill to see if that would help, but it didn’t help at all with any of my current symptoms and gave me terrible cramps and made me feel crappy the whole time.”

“I am really glad to be on estrogen HRT because it is preventing the double-whammy of menopause and ADHD, at least for now,” says Jaime, an ADDitude reader in North Carolina.

“I have recently started on hormones for women in (peri)menopause, and the horrendous brain fog I’ve been dealing with for the past 18 months has lifted a great deal,” says Isabella, an ADDitude reader in the Netherlands.

“I am postmenopausal, and take estrogen replacement daily,” says Amy, an ADDitude reader in Michigan. “I think my ADHD is worse on days that I miss my dose of estrogen.”

What ADHD Experts Say

Given the known relationship between fluctuating hormones and ADHD symptoms, researchers must explore how we can safely employ HC and HRT to ameliorate both mood and cognitive symptoms.

“Given the increased risk of depression in women with ADHD, which may be further increased by oral HC use, future clinical trials on contraception need to include women with mental health problems, including ADHD, to guide prescribers on the best available choices for these women,” write the authors of the JAACP study.

“In medicine, women are still understudied because they are considered less reliable research subjects than men, due to hormonal changes during the lifespan,” explains Kooij in “Hormonal Sensitivity of Mood Symptoms in Women with ADHD Across the Lifespan.”⁸ “Women with ADHD have been even more understudied, while exactly their hormonal mood changes and increased severity of ADHD urgently need our research attention.”

“Females with ADHD are usually excluded from studies on contraceptive effectiveness and tolerability,” Skoglund explains. “As contraception is a burden for women to carry due to male methods being less effective, lack of knowledge on how different contraceptives affect women with ADHD may create an undue burden.”

Next Steps

Contribute to research on the impact of perimenopause and menopause on ADHD symptoms by completing ADDitude’s ADHD in Menopause survey.
Download this free resource: ‘Interventions for Treating ADHD During Perimenopause and Menopause’
Read these new recommended reads on menopause:
- The Menopause Brain: New Science Empowers Women to Navigate the Pivotal Transition with Knowledge and Confidence, by Lisa Mosconi, Ph.D.
- The New Menopause: Navigating Your Path Through Hormonal Change with Purpose, Power, and Facts, by Mary Claire Haver, M.D.

HRT, Birth Control & ADHD: Related Reading

We Demand Attention: A Call for Greater Research on ADHD in Women

Intro: Top 10 Research Priorities

Sex Difference in ADHD
The Health Consequences of Delayed ADHD Diagnoses on Women
How Hormonal Changes Impact ADHD Symptoms in Women
How Perimenopause and Menopause Impact ADHD Symptoms, and Vice Versa
The Elevated Risk for PMDD and PPD Among Women with ADHD
The Safety and Efficacy of ADHD Medication Use During Pregnancy and While Nursing
How ADHD Medication Adjustments During the Monthly Menstrual Cycle Could Improve Outcomes for Women
The Long-Term and Short-Term Implications of Hormonal Birth Control and Hormone-Replacement Therapy Use Among Women with ADHD
How and Why Comorbid Conditions Like Anxiety, Depression, and Eating Disorders Uniquely Impact Women with ADHD
Early Indicators of Self-Harm, Partner Violence, and Substance Abuse Among Girls and Women with ADHD

Sources

¹Eng, A.G., Nirjar, U., Elkins, A.R., Sizemore, Y.J., Monticello, K.N., Petersen, M.K., Miller, S.A., Barone, J., Eisenlohr-Moul, T.A., & Martel, M.M. (2024). Attention-deficit/hyperactivity disorder and the menstrual cycle: Theory and evidence. Hormones and Behavior, 158(105466). ISSN 0018-506X. https://doi.org/10.1016/j.yhbeh.2023.105466

²Lundin, C., Wikman, A., Wikman, P., Kallner, H. K., Sundström-Poromaa, I., & Skoglund, C. (2023). Hormonal Contraceptive Use and Risk of Depression Among Young Women With Attention-Deficit/Hyperactivity Disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 62(6), 665–674. https://doi.org/10.1016/j.jaac.2022.07.847)

³Langer, R. D., Hodis, H. N., Lobo, R. A., & Allison, M. A. (2021). Hormone replacement therapy – where are we now?. Climacteric : The Journal of the International Menopause Society, 24(1), 3–10. https://doi.org/10.1080/13697137.2020.1851183

⁴Camara, Bettina, et al. “Relationship between sex hormones, reproductive stages and ADHD: a systematic review.” Archives of Women’s Mental Health, vol. 25, no. 1, Feb. 2022, pp. 1+. Gale OneFile: Health and Medicine

⁵Ali SA, Begum T, Reza F. Hormonal Influences on Cognitive Function. Malays J Med Sci. 2018 Jul;25(4):31-41. doi: 10.21315/mjms2018.25.4.3. Epub 2018 Aug 30. PMID: 30914845; PMCID: PMC6422548.

⁶Skoglund C., Kopp Kallner H.,,Skalkidou A. et al. Association of attention-deficit/hyperactivity disorder with teenage birth among women and girls in Sweden. JAMA Netw Open. 2019; 2e1912463 https://doi.org/10.1001/jamanetworkopen.2019.12463

⁷Lindh I., Hognert H., Milsom I. The changing pattern of contraceptive use and pregnancies in four generations of young women. Acta Obstet Gynecol Scand. 2016; 95: 1264-1272 https://doi.org/10.1111/aogs.13003

⁸Kooij JS. Hormonal sensitivity of mood symptoms in women with ADHD across the lifespan. Eur Psychiatry. 2023 Jul 19;66(Suppl 1):S23. doi: 10.1192/j.eurpsy.2023.92. PMCID: PMC10417850.

“Women with ADHD Are Caught In an Endless Cycle”

Nathaly Pesantez — Sun, 05 May 2024 08:09:13 +0000

The following is a personal essay reflecting the opinions of the authors.

May 5, 2024

Every ADHD expert that we know believes that girls and women with ADHD are underdiagnosed and misdiagnosed.

In 1994, a meeting of ADHD experts was convened at the National Institute of Mental Health (NIMH) to make recommendations about ways to better meet the needs of girls. This committee strongly recommended the creation of diagnostic criteria designed to better identify girls with ADHD. More than a generation later, this recommendation remains largely ignored, despite the clear and compelling need for such a change.

It is well documented that untreated ADHD in women leads to potentially disastrous consequences starting in adolescence with anxiety, depression, low self-esteem, and unplanned pregnancies followed by academic failure, psychiatric hospitalization, and suicide. Women with ADHD are more likely to face divorce, to become single parents who raise challenging children with ADHD, to experience domestic violence, and to struggle with income insufficiency — which, in combination, trigger the destructive spiral of intergenerational ADHD challenges.

[Read: Wanted — ADHD Research on Women & Girls]

Better identification and treatment of women will have a positive cascading effect, benefitting women by increasing self-esteem, improving employment, and building stronger parenting skills that, in turn, benefit their children.

Today, as APSARD (The American Professional Society for Attention and Related Disorders) is undertaking worthy effort to develop the first U.S. adult ADHD guidelines, we urge its leaders not to overlook the longstanding need for better identification of ADHD in women. We are calling on all women with ADHD, those who care about them, and those who provide care for them to sign our petition to develop gender-equitable ADHD diagnostic criteria. Gender-equitable criteria will allow us to better identify women with ADHD and help them to receive the treatment they need.

The effort to create more gender-equitable ADHD criteria has been thwarted by “lack of research evidence” to support such changes. We are caught in an endless cycle: there is minimal investment in research on gender differences in ADHD, resulting in limited evidence-based knowledge about gender differences.

Now, as APSARD works to recommend new adult ADHD diagnostic guidelines, we urge them to consider the long-overdue need to develop guidelines that are better suited to correctly identify females with ADHD. This guideline process can massively advance gender-equity if APSARD leaders are forward-thinking enough to take the needed steps. Alternatively, if gender is ignored, the guidelines could calcify historically male-biased approaches to describing and diagnosing ADHD.

[Read: ADHD Symptoms in Women Aren’t ‘Hidden.’ They Are Misinterpreted.]

We urge APSARD, as part of its adult ADHD guidelines, to acknowledge that current diagnostic approaches are not fully gender-equitable, and to propose more gender-equitable criteria for further study. Once such recommendations are made by a well-respected organization, it becomes more likely that research dollars, including funding from President Biden’s Executive Order on Women’s Health, will be allocated to research studying these proposed criteria.

We call on APSARD to take the first step in this long-overdue process by identifying gender-equity as a priority and by proposing more gender-equitable diagnostic criteria. Once this exciting first step is undertaken, the criteria can be tested and improved through a process that makes them evidence-based. Please sign our petition and share it widely through your networks.

Petition to APSARD: Improve Gender-Equity in the Diagnosis of Adult ADHD

We Demand Attention: A Call for Greater Research on ADHD in Women

Intro: Top 10 Research Priorities

Michael Morse, M.D., is the director of psychiatric education and training at The Chesapeake Center — ADHD, Learning and Behavioral Health in Bethesda, Maryland. Kathleen Nadeau, Ph.D., is founder and director of The Chesapeake Center.

We Demand Attention on How Medication Adjustments During the Monthly Menstrual Cycle and Menopause Could Improve Treatment Outcomes for Women

Anni Layne Rodgers — Fri, 03 May 2024 22:20:56 +0000

What We Know

A small study suggests that menstruating people with ADHD may achieve more effective and consistent symptom control by increasing the dosage of their prescribed stimulant medication in the luteal phase, when estrogen levels hit their lowest point.

There is a dearth of research examining the changes in ADHD symptoms and medication efficacy during all phases of the menstrual cycle, and during other times of hormonal change.

However, one 2023 study published in Front Psychiatry found that increasing a patient’s dosage of stimulant medication during the week prior to menstruation can significantly improve cognitive and emotional symptoms of ADHD during this notoriously difficult phase in the menstrual cycle.¹ The study was the first of its kind to examine the impact of adjusting stimulant medication dosages during the menstrual cycle for women with ADHD and co-occurring depression and premenstrual dysphoric disorder (PMDD) – a severe form of PMS.

Prior to the study, these women experienced “diminished response to amphetamines in the late luteal phase” and an “exacerbation of their ADHD and depressive symptoms in the premenstrual week” that was not helped by their regular ADHD medication. This experience was echoed in ADDitude’s 2023 survey of nearly 2,000 women with ADHD, two-thirds of whom said they experienced intense symptoms of premenstrual syndrome (PMS) or PMDD, beginning, on average, at age 14 and lasting for up to 40 years. The most common luteal-phase symptoms reported were:

Irritability (80%)
Mood swings (79%)
Cramps or discomfort (78%)
Tension/anxiety (68%)
Lack of focus/concentration (66%)

“In ADHD, we know there is low prefrontal dopamine. If you have low estrogen as well in the third and fourth week of the cycle, you have doubly low levels of the neurotransmitters and hormones that help you focus and control your mood,” said Sandra Kooij, M.D., one author of the 2023 study, titled, “Female-Specific Pharmacotherapy in ADHD.” “This may help to explain why women with ADHD have much more severe symptoms during that week.”

When Kooij and her colleagues administered higher doses of prescribed stimulant medication to subjects with ADHD during the luteal phase, “all nine women experienced improved ADHD and mood symptoms with minimal adverse events. Premenstrual inattention, irritability and energy levels improved, and now resembled the other non-premenstrual weeks more closely. All women decided to continue with the elevated premenstrual pharmacotherapy.”

No similar studies on ADHD symptoms in menopausal women exist. As stated in Part Four of this We Demand Attention package, research tells us only that ADHD medications may help women without ADHD manage typical executive function difficulties associated with the onset of menopause.

What We Don’t Know

Women with varying ADHD subtypes may respond differently to cycle dosing of stimulant medications, however, we don’t understand the implications of modulating methylphenidate vs. amphetamine during hormonal fluctuations due to a lack of research.

At a very basic level, we need research validating the presumption that hormonal fluctuations during the menstrual cycle, and hormonal changes during perimenopause and menopause, influence ADHD symptoms, ADHD medication effectiveness, and overall functioning. As stated in Part Three of this We Demand Attention package, understanding the relationship between hormonal fluctuations and ADHD symptom characteristics and severity across the lifespan is a critical first step.

Tailoring medication dosages to hormonal status — known as cycle dosing — could optimize ADHD treatment and improve mood disorders in women who experience premenstrual symptoms.²Kooij’s 2023 study strongly suggests this, though it followed only nine women with ADHD. A larger, longitudinal study is needed to understand the long- and short-term implications of adjusting ADHD medication according to hormonal fluctuations. Similar studies are also needed to understand the risks and rewards associated with ADHD medication adjustments during perimenopause, when estrogen and progesterone levels begin a steady decline, and during menopause, when they bottom out and stay low. Longitudinal studies of menstruating, perimenopausal, and menopausal women with ADHD can help answer pivotal questions, such as:

Do symptoms of PMS and PMDD impact women with inattentive-type ADHD and combined-type ADHD similarly? Or do symptoms differ according to subtype?
During the luteal phase, do patients respond differently to higher doses of methylphenidate vs. amphetamine? If so, what are the significant differences?
Could some patients benefit from lower doses of stimulant medication during the high-estrogen follicular phase, when estrogen and dopamine potentiate each other and may encourage risky behaviors in some women?
Could cycle dosing with ADHD medication also improve symptoms of depression and/or anxiety in women with those comorbidities? Could the converse also be true?
Is cycle dosing of ADHD medication associated with any short- or long-term health risks?
How might use of hormonal birth control complicate cycle dosing for women with ADHD?
Could women with PMDD experience PMDD improvement of those symptoms with cycle dosing of ADHD medication? If so, would they require even higher doses than average to achieve significant results?

Why It Matters

Unlocking the power of cycle dosing for women who suffer extreme symptoms of ADHD and its comorbidities during each luteal phase could save them from more than 3,000 days of agony over a lifetime.

In a survey of 703 ADDitude readers, 36% said their lives could be significantly impacted by research exploring “how adjusting ADHD medication during the menstrual cycle could improve symptom control.” In a separate survey, we learned that two-thirds of ADDitude readers who menstruate experience significant symptoms of PMS and/or PMDD. In other words, the majority of women with ADHD are suffering each month from debilitating symptoms of comorbid conditions that may be addressed, at least in part, with simple medication dosage adjustments. That seems like a no-brainer.

Though some psychiatrists are collaborating with patients on cycle dosing now, widespread adoption of this potentially life-changing practice will hinge on the availability of reliable research data from longitudinal studies on women with ADHD and comorbid conditions. Initial studies demonstrate universal benefit to women who are suffering; we just need larger studies and more of them to unlock this treatment for tens of millions of menstruating girls and women.

Similar research on perimenopausal and menopausal women with ADHD could help to provide relief during the phase of life when ADDitude readers tell us their ADHD symptoms are at their worst due to falling estrogen and progesterone.

What ADDitude Readers Say

According to an ADDitude survey of nearly 1,700 women with ADHD, symptoms experienced during the luteal phase range from migraines and memory loss to self-harm and suicidality. Very few have tried cycle dosing because very few clinicians recommend it.

“My ADHD medication doesn’t work during the luteal phase,” wrote one 36-year-old ADDitude survey respondent in Canada. “I had extreme emotional dysregulation.”

“My ADHD meds are significantly less efficacious for about 10 days per month; two days before the bleed I am a barely functional zombie,” wrote another reader.

“The week leading up to my cycle, I might as well not even take my ADHD meds,” wrote a woman in Wisconsin. “It’s like my body overrides them.”

“I’d like to see research into a device similar to that for people with diabetes that monitors hormone levels and micro-doses medication for great ADHD medication efficiency,” wrote a woman from Ireland in her 60s.

As covered in Part Four of this We Demand Attention Package, ADDitude readers almost unanimously report that their ADHD symptoms were most debilitating and life-altering during perimenopause and menopause.

“Please, for the love of God, do something on the changes in ADHD medication dosing that perimenopausal and menopausal women need,” wrote a woman with ADHD and anxiety in her 50s. “The effectiveness of ADHD meds has changed drastically for the worse for me. I used to be really sharp when I could focus, and the brain fog is significantly disabling now.”

“The DEA’s strict limits on stimulants leaves doctors unwilling to adjust ADHD meds for women in their 40s and 50s,” she said. “If your blood pressure medication stopped being as effective in perimenopause, would your doctors shrug and say, ‘Well, you’ll just have to work with the dose you’ve got?’ No, they would not.”

What ADHD Experts Tell Us

Hormonal status matters. Cycle dosing is a reasonable and effective response to elevated symptoms of ADHD and comorbidities during the menstrual cycle, but few healthcare providers understand the efficacy of this strategy due to a lack of research.

“Is it possible that women could require different medications and/or dosages at different times in their cycle? Absolutely, unequivocally, without doubt,” said Jeanette Wasserstein, Ph.D., in the ADDitude webinar titled “Hormonal Fluctuations and ADHD.” “The problem is that psychiatrists don’t know this, or very few psychiatrists know this.”

“Research should assess the degree to which girls and women with ADHD require additional or unique treatment approaches,” said Julia Schechter, Ph.D., of the Duke Center for Girls and Women with ADHD. “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.”

Next Steps

Contribute to research on the impact of hormones on ADHD symptoms by downloading ADDitude’s Free Menstrual Cycle Workbook for Women with ADHD. After tracking key ADHD symptoms for two cycles, complete this anonymous survey regarding your findings.
Download this ‘Free Guide to Hormones and ADHD in Women’
Join the Head Heart Hormones network co-founded by Sandra Kooij, M.D., to address questions of ADHD, among other conditions, in menopause.

Menstrual Cycle and Menopause: Related Reading

We Demand Attention: A Call for Greater Research on ADHD in Women

Intro: Top 10 Research Priorities

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

¹de Jong M, Wynchank DSMR, van Andel E, Beekman ATF, Kooij JJS. Female-specific pharmacotherapy in ADHD: premenstrual adjustment of psychostimulant dosage. Front Psychiatry. 2023 Dec 13;14:1306194. doi: 10.3389/fpsyt.2023.1306194. PMID: 38152361; PMCID: PMC10751335.

²Roberts, B., Eisenlohr-Moul, T., & Martel, M. M. (2018). Reproductive steroids and ADHD symptoms across the menstrual cycle. Psychoneuroendocrinology, 88, 105–114. https://doi.org/10.1016/j.psyneuen.2017.11.015

Wanted: ADHD Research on Women & Girls

Carole Fleck — Wed, 01 May 2024 00:04:21 +0000

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

We Demand Attention on the Safety and Efficacy of ADHD Medication Use During Pregnancy and While Nursing

Anni Layne Rodgers — Tue, 30 Apr 2024 14:40:50 +0000

What We Know

New research suggests that continued ADHD medication use during pregnancy carries few maternal or fetal risks, however most women do not treat their ADHD symptoms with medication while pregnant.

Women who continue dexamphetamine use throughout pregnancy experience no elevated risk of adverse neonatal or maternal health outcomes, compared to those who cease ADHD medication use during pregnancy. This groundbreaking conclusion of a March 2024 study¹ including 1,488 pregnant people reinforced the findings of an even larger Swedish study published in 2023.

That research, which followed 898 children exposed to ADHD medication in utero, found that such exposure does not impair a child’s neurodevelopment or physical growth. “These findings provide reassurance for women with ADHD who depend on ADHD medication for daily functioning and who consider continuing medication in pregnancy,” the study concluded.

Still, just 2.45% of ADDitude readers who have been pregnant said they used ADHD medication during pregnancy, according to a survey of 1,180 such women. Many of these survey respondents said they remained unmedicated during pregnancy not due to fears or medical advice, but because they weren’t yet diagnosed with ADHD.

Without ADHD medication to ease symptoms during pregnancy, life felt unbearable for many women. “I wasn’t diagnosed until age 49,” wrote one 53-year-old woman in Australia. “The first trimester of my pregnancy was awful. I could not control my reactions or emotions and it’s fair to say that, in hindsight, it was the worst time for ADHD issues I can recall in my life.”

More than three-quarters of the women surveyed by ADDitude said their ADHD symptoms stayed the same or worsened during pregnancy — and nearly all were unmedicated during this time. Of the 29 survey respondents who continued taking ADHD medication during pregnancy, most reported achieving successful symptom management that improved their quality of life.

“During my first pregnancy, I came off my medications cold turkey after being on them for 24 years. I do NOT recommend this strategy,” wrote a woman diagnosed with ADHD at age 8. “I nearly lost my job during that time. I was more anxious/worried, and I couldn’t complete even the simplest tasks. My symptoms did not change like this during my second and third pregnancies because I was able to continue taking my medication.”

“I consulted my doctor, and we decided the benefits outweighed the risks” of continued medication use during pregnancy, wrote a 33-year-old reader in North Carolina.

According to a November 2022 study of 45,737 pregnant females with ADHD, medication use during pregnancy may be protective against a host of adverse outcomes.² The study found that pregnant individuals with ADHD who were unmedicated were significantly more likely than their non-ADHD counterparts to experience depressive episodes, postpartum depression, hyperemesis gravidarum (extreme, persistent nausea), eclampsia (seizures in pregnant people with preeclampsia), gestational hypertension, and cardiac disease, among 10 other adverse health outcomes. Women with ADHD who took ADHD medication during pregnancy saw those risks fall across the board. Women who took stimulant medication saw the biggest risk reductions in preterm births and anemia, while women taking non-stimulants saw the greatest risk reductions in renal disease, malnutrition, and gestational diabetes.

“Women with moderate-to-severe ADHD should not necessarily be counseled to suspend their ADHD treatment [during pregnancy] based on these findings,” wrote the study authors. “Untreated ADHD can lead to negative outcomes for both mother and infant. Studies have shown that pregnant women with ADHD may have greater difficulty with managing obstetric appointments, which may increase the risk of negative health outcomes of undiagnosed and unmonitored complications such as preeclampsia and gestational diabetes… Given the highly correlative nature of ADHD and other mental health conditions, one must consider comorbidities of untreated ADHD. Left untreated during pregnancy, individuals with ADHD might be at increased risk of depression, feelings of isolation, and familial conflict.”

A 2020 study found that women who discontinued stimulant medication use during pregnancy experienced a significant increase in postnatal depression, despite remaining on their antidepressant medication. They also suffered significant impairment in family functioning.³ Meanwhile, a large Swedish cohort study with sibling analysis recently found that taking acetaminophen (Tylenol) during pregnancy was not associated with the development of autism or ADHD in babies.⁴

What We Don’t Know

Though 99% of women with ADHD report at least one comorbid condition, no research exists on the safety and efficacy of multimodal treatment for ADHD, depression, and/or anxiety during pregnancy, or the relative benefits and risks of each medication class.

We rely largely on anecdotal evidence today to argue that unmedicated ADHD symptoms cause significant psychological and neurocognitive distress during pregnancy, and that these impairments are more severe than those experienced by pregnant women without ADHD. A 2014 study concluded that, “It is possible that women with preexisting ADHD constitute a vulnerable subgroup for neurocognitive worsening during pregnancy,” however, scant research exists to prove or disprove this theory. Are women with ADHD who suspend treatment during pregnancy more likely to experience job loss, relationship problems, and mental health crises? The 2022 study titled “Obstetric Complications in Mothers with ADHD” shows that depression risk is 2 to 3 times higher for this cohort; however, we’re left making educated guesses about most other maternal outcomes.

That 2022 study was among the first to demonstrate the positive outcomes associated with medication use during pregnancy for women with ADHD, and to confirm the low risk of poor fetal outcomes from maternal medication use. However, the study authors acknowledge that they “did not examine many other comorbid conditions, such as depression, anxiety, or substance use, which may have impacted the results.” In a 2022 ADDitude survey of 5,230 women with ADHD, 73% said they had anxiety, 63% said they experienced depression, 23% said they had PTSD or c-PTSD, and 22% said they suffered migraines. Comorbidities are the rule with ADHD, not the exception.

Future research on pregnant people with ADHD must take into consideration comorbid conditions and aim to answer questions such as these:

How do the hormonal changes during each trimester of pregnancy specifically impact symptoms of hyperactive/impulsive vs. inattentive ADHD?
Why do some women experience heightened or aggravated ADHD symptoms during pregnancy, while others experience more mild ADHD symptoms during pregnancy?
Is there a correlation between the dosage of ADHD medication used during pregnancy and maternal or fetal outcomes? If so, what is the relationship?
How do the risks of adverse fetal outcomes differ, if at all, with use of prescribed methylphenidate vs. amphetamine vs. a non-stimulant medication during pregnancy? While nursing?
Are the medications less commonly prescribed for ADHD — such as bupropion, atomoxetine, viloxazine, clonidine, and guanfacine — safe to use during pregnancy?
Is it safe to use ADHD medications in conjunction with antidepressant medications, such as serotonin reuptake inhibitors (SSRIs), serotonin-norepinephrine reuptake inhibitors (SNRIs), and tricyclic antidepressants (TCAs), during pregnancy? Similarly, is it safe to treat both ADHD and anxiety during pregnancy?
What are the relative risks and benefits of ADHD medication use vs. antidepressant use or anti-anxiety medication use for pregnant women with these conditions?
What are the long-term mental health outcomes for women with ADHD who are medicated during pregnancy and while nursing, vs. those who are not medicated during those critical periods?

The list of questions could stretch on regarding ADHD symptoms, treatment, and outcomes during and after pregnancy, but answers to the above would significantly impact many women’s lives.

Why It Matters

Without research findings to provide a clear understanding of the benefits and risks associated with ADHD medication use during pregnancy, many women fearful of adverse outcomes will discontinue medication use, only to suffer a range of difficulties that can make day-to-day life nearly intolerable. Research studies to clarify these questions will guide more informed, effective treatment decisions and improve the mental and physical health outcomes for many neurodivergent patients.

The fact is that roughly 97% of women with ADHD receive no ADHD treatment during pregnancy, resulting in serious and sometimes fatal health consequences. Improving our understanding of ADHD medication safety and efficacy during pregnancy stands to reduce risks of everything from depression to preterm birth and gestational diabetes in women with the condition. This can save women’s lives and improve the lives of their family members as well.

The maternal mortality rate in the United States – 32.9 deaths per 100,000 live births overall and 69.9 deaths per 100,000 live births among Black women — has nearly doubled since 2017. The U.S. maternal mortality rate is 10 times that of Norway and four times that of the European Union. Why aren’t we doing everything in our power to keep women safe and healthy during and after pregnancy?

A Related Consideration

Young women with ADHD are about four times more likely than their neurotypical peers to experience an unwanted pregnancy before age 30,⁵ according to research conducted, in part, by Stephen Hinshaw, Ph.D., principal investigator of the ongoing Berkeley Girls with ADHD Longitudinal Study.

“By the time they reached their mid to late 20s, about 43% of the BGALS participants in the ADHD group had one or more unplanned pregnancies compared to about 10% of individuals in the comparison group,” said Hinshaw, who noted that girls and women with ADHD face higher risk for an array of negative outcomes including higher rates of depression and anxiety, intimate partner victimization, and risky sexual behaviors.

What if, armed with significant research regarding the symptoms of ADHD in young women, obstetricians partnered with primary care doctors or neurocognitive specialists to screen patients with unplanned pregnancies for ADHD? We know from the ADDitude survey of 1,180 women with ADHD that few knew they had ADHD when they were pregnant and, therefore, they did not receive the healthcare they needed to avoid the adverse health outcomes common during and after pregnancy. Screening this population of patients for ADHD would significantly improve outcomes for women during a time of heightened symptoms and physical and psychological stress, especially if evaluations were paired with reliable data and medical advice about medication use during pregnancy.

What ADDitude Readers Tell Us

Patients who work closely with their healthcare providers to devise ADHD treatment plans and monitor vital signs while using medication during pregnancy achieve consistently good outcomes, while those who cease medication outright sometimes suffer symptoms that impair their professional and personal lives.

“Working memory issues were obvious throughout pregnancy,” said a 33-year-old health care provider in Wisconsin who stopped taking Adderall while pregnant. “I would forget what I was going to say once it was my turn to talk with my patients. My impulsivity was the worst in the first trimester; I was constantly eating out of boredom.”

“I saw a special OBGYN who frequently monitored my and my baby’s health,” wrote a 35-year-old in Illinois. “I continued to take 5 mg Adderall two times a day as well as a mood stabilizer.”

“I actually feel like the greater purpose of caring for my health because there was another human involved helped me stay committed to better habits that mitigate symptoms,” said a reader. “I was also seen by a special OBGYN so that I could stay on a low dose of my mental health medications, which I’m sure worked better in combination with consistently making positive lifestyle changes.”

“During pregnancy, I was off my medication, so my life was like it was before the diagnosis and starting medication,” said a 50-year-old reader in Maryland. “Thankfully, I was busy working and getting ready for the baby. Being busy always helps me.”

What ADHD Experts Say

“The new demands of caring for their babies during a time of changing hormone levels, infant feedings, and sleep disruption are exceedingly difficult for some women,” wrote Allison S. Baker, M.D., in the ADDitude article “Treating for Two: ADHD Meds in Pregnancy.” “Being an effective mother requires the ability to get and stay focused, modulate attention, control impulsivity, and utilize executive function skills. Women with ADHD struggle in these domains, yet this population and the course of their condition during pregnancy and the postpartum period have received little attention and systematic study.”

Next Steps

Write to the White House Initiative on Women’s Health Research (WomensHealthResearch@who.eop.gov) to request funding for research dedicated to understanding how ADHD treatment during pregnancy may significantly improve both maternal and fetal health outcomes.

We Demand Attention: A Call for Greater Research on ADHD in Women

Intro: Top 10 Research Priorities

Sources

¹Russell, D.J., Wyrwoll, C.S., Preen, D.B. et al. Investigating maternal and neonatal health outcomes associated with continuing or ceasing dexamphetamine treatment for women with attention-deficit hyperactivity disorder during pregnancy: a retrospective cohort study. Arch Womens Ment Health (2024). https://doi.org/10.1007/s00737-024-01450-4

²Walsh, C. J., Rosenberg, S. L., & Hale, E. W. (2022). Obstetric complications in mothers with ADHD. Frontiers in reproductive health, 4, 1040824. https://doi.org/10.3389/frph.2022.1040824

³Baker AS, Wales R, Noe O, Gaccione P, Freeman MP, Cohen LS. The Course of ADHD during Pregnancy. Journal of Attention Disorders. December 2020. doi:10.1177/1087054720975864

⁴Lee BK, et al “Acetaminophen use during pregnancy and children’s risk of autism, ADHD, and intellectual disability” JAMA 2024; DOI: 10.1001/jama.2024.3172.

⁵Hinshaw, S. P., Owens, E. B., Zalecki, C., Huggins, S. P., Montenegro-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(6), 1041–1051. https://doi.org/10.1037/a0029451

We Demand Attention on the Elevated Risk for PMDD and PPD Among Women with ADHD

Anni Layne Rodgers — Mon, 29 Apr 2024 16:55:46 +0000

What We Know

ADHD is a significant risk factor for the development of premenstrual dysphoric disorder (PMDD) and postpartum depression (PPD), both of which are debilitating and potentially life-threatening conditions that disproportionately impact women with ADHD.

Premenstrual Dysphoric Disorder (PMDD) is a more serious form of premenstrual syndrome (PMS) that causes clinically significant and impairing depression, anxiety, mood swings, and uncomfortable physical symptoms in the week leading up to the onset of a period. PMDD impacts about 2% of the general population of women (though actual prevalence rates may be higher)¹, often requires medication (typically, hormonal birth control and antidepressants), and is associated with an elevated risk for suicidality and suicide attempts.

Research on PMDD and ADHD is limited. In a 2021 study of 209 women with ADHD, more than 45% reported having symptoms suggestive of PMDD.² A recent ADDitude survey revealed that a staggering 66% of women with ADHD said they have suffered from PMS and/or PMDD beginning, on average, around age 14 — with nearly 60% of respondents reporting symptoms that lasted 20 years or longer.

PMDD is caused by decreasing levels of estrogen and progesterone after ovulation and before menstruation. These hormones also drop markedly following childbirth, contributing to postpartum depression in 10% to 15% of women.³ Among women with ADHD, the risks for postpartum mood disorders are elevated.

A 2023 study found that about 25% of women with ADHD who gave birth were diagnosed with anxiety disorders postpartum compared to 4.6% of women without ADHD. In addition, about 17% of women with ADHD met the criteria for PPD compared to 3.3% of women without ADHD who had given birth.⁴

Another study found that women with ADHD, even those without a history of depression, are 24% more likely to be diagnosed with PPD than are women without ADHD.⁵ A survey of ADDitude readers found an even higher prevalence — 61% of women with ADHD who had given birth reported experiencing symptoms of PPD, at least a fourfold increase over the rate found in the general population of birthing individuals.

ADDitude readers who said they suffered with PMDD reported that symptoms lasted roughly one year, and included the following:

Crying spells: 76%
Feelings of worthlessness, shame, guilt, or inadequacy: 72%
Mood swings: 66%
Irritability: 62%
Lack of concentration: 58%
Sleep problems: 57%

What We Don’t Know

Why do women with ADHD face an outsized risk for PMDD and PPD, and why are the symptoms they experience more severe and longer lasting than those of their neurotypical peers?

Research has not yet explained the disproportionate links between ADHD and both PMDD and postpartum mood disorders. We do not know why women with ADHD appear more sensitive to the hormonal fluctuations of the menstrual cycle and the hormonal changes following childbirth. Research on these associations would help us answer these essential questions:

What is the relationship between ovarian hormones and ADHD?
What is the relationship between hormones and the neurotransmitters involved in ADHD?
Why do women with ADHD experience PMDD and PPD more frequently and more severely than their neurotypical counterparts?
Why are some women with ADHD at greater risk for PMDD and/or PPD than others?
What are the early warning signs of PMDD and PPD in people with ADHD?
How can early diagnosis of and treatment for PMDD and PPD improve long-term outcomes for girls and women with ADHD?
Conversely, what are the greatest risks associated with undiagnosed and untreated PMDD or PPD in women with ADHD?
What treatment modalities most effectively address the symptoms of PMDD and PPD in women with ADHD?
Might women with ADHD face higher risk for other hormonal health conditions?

To that last question, J.J. Sandra Kooij, M.D., Ph.D., adds: “Why do women with ADHD suffer more frequently with polycystic ovarian syndrome (PCOS), associated with fertility problems and hormonal disturbances, and with premature ovarian insufficiency (POI), associated with early menopausal symptoms?”

“These conditions are commonly not recognized or treated, and they can invalidate women severely at an early age,” says Kooij, who has published more than 100 peer-reviewed international papers and more than 20 books or book chapters on ADHD in adults.

Why It Matters

PMDD is a serious risk factor for depression and self-harm. Postpartum depression is also potentially life-threatening. When researchers and medical professionals fail to address the high comorbidity rates between ADHD and these conditions, they put women’s lives at risk unnecessarily.

PMDD often co-occurs with other psychiatric disorders, including major depressive disorder (MDD) and anxiety disorder.⁶ ⁷ Individuals with PMDD are also at greater risk for suicide and suicidal behavior.⁸

Despite the known association between ADHD and PMDD, and the serious health risks associated with PMDD, very few physicians screen girls with ADHD for signs and symptoms of premenstrual dysphoric disorder. Even worse, ADDitude readers regularly tell us that their early complaints of PMDD symptoms were dismissed or ignored by healthcare professionals.

“I have exhibited significant PMDD symptoms since puberty,” wrote one ADDitude reader. “My symptoms were ignored, and I was mistreated more times than I could count. There was always an excuse — whether it came from other women, my family doctor, or other doctors.”

Likewise, women with ADHD are known to face a higher risk for PPD, however routine screenings are rare. In an ADDitude webinar poll, about 70% of respondents said their doctor missed their symptoms of postpartum depression. In a separate poll, about 45% of ADDitude readers said they wouldn’t be able or aren’t sure if they’d be able to identify postpartum depression in themselves or in others. Almost half of ADDitude survey respondents said they were not offered any treatment for their postpartum depression, while 41% were prescribed antidepressants and 20% received therapy.

“The nurses I spoke to did not recognize my postpartum depression and told me it was probably a normal hormonal drop, but things never improved,” said a 36-year-old mother with ADHD in Pennsylvania.

Research into the root causes, key indicators, and effective treatments for hormonal health conditions associated with ADHD would improve the quality of life and healthcare for women with ADHD by…

Educating healthcare professionals regarding the high rates of comorbidity between ADHD and PMDD and PPD
Educating patients about telltale signs of these conditions and reducing stigma around symptoms
Encouraging routine screenings that could significantly reduce patient suffering by identifying PMDD and PPD early
Introducing new treatment protocols based on scientific evidence
Suggesting collaborative treatment strategies for gynecologists and ADHD practitioners

What ADDitude Readers Tell Us About PMDD

PMDD is a serious health condition that impacts daily functioning, relationships, and mental health every month for decades. What’s worse, many women with PMDD report feeling dismissed, ignored, and left to suffer by healthcare practitioners who did not take their concerns seriously and failed to offer treatment options.

“The first two to three days of my cycle were always full of painful cramping and nausea,” wrote one ADDitude reader with PMDD. “I was completely miserable and sometimes doubled over in pain. Then I’d have heavy bleeding for 7 to 10 days… Doctors just scoffed and said, ‘I couldn’t possibly be in that much pain.’”

“Treatment-resistant PMDD has affected my whole life,” said Ray, an ADDitude reader in Canada. “I have struggled with physical symptoms and social stigma. The severity of my symptoms has destroyed my social and work relationships… I have hurt many people, just trying to experience a life worth wanting.”

“Seven to 10 days before my cycle starts, I get irritable and sad. I rage out. I feel like nothing can contain me or calm the storm. I hurt the people around me, the people I love,” said an ADDitude reader with PMDD. “It scares my kids and frustrates my husband. I was finally diagnosed last month and have been taking Zoloft. I was amazed this last pre-cycle time that I could remain calm. I used to think it was me; that I was born ‘bad.’ It’s been a relief to feel my true loving self.”

“For one week a month, I turn into a different person. I have outbursts of laughter, tears, and anger,” said Stacey in Kenya. “I feel like combusting. My sensory issues are heightened. I’m irritated by everything. My stimming gets way worse.”

“I thought it was normal to feel suicidal four to five days leading up to my period,” said Kristy, an ADDitude reader with PMDD in Australia.

What ADDitude Readers Tell Us About PPD

Support for postpartum women with ADHD is inadequate.

“My anxiety level skyrocketed and I felt like I might be losing myself,” wrote an ADDitude reader in California who suffered symptoms of postpartum depression for 7 to 9 months. “There was a lot of time spent in my head wondering if I was going crazy.”

“My postpartum depression continued after the birth of my third child, and I was hospitalized eight times for severe depression,” wrote an Australian reader who had persistent PPD.

“I didn’t want to hold my child and actively sought to hand him off to others in the early weeks,” wrote an ADDitude reader in Washington who also suffered from PPD for 7 to 9 months. “I still feel robbed of that miraculous time if I think on it too much, so I try to focus on the good parts and the happy moments instead. And my son and I are closer now than ever. He’s awesome and gives great hugs. Maybe that makes up for it a little.”

What ADHD Experts Say

Devising better screening protocols and treatment strategies for PMDD and PPD in women with ADHD should be a top medical priority given the high risk of adverse outcomes and the established connections between these conditions.

“We need studies on how cycling hormones impact all aspects of female behavior and impairment, underscoring the importance of new research based on awareness of the hormone/neurotransmitter connection,” says Ellen Littman, Ph.D. “After acceptance of the centrality of hormonal involvement, specific areas of needed research include post-partum, perinatal, climacteric, menopause, PMS, PMDD, and PCOS.”

“We need treatment studies investigating what is most helpful for women with PMDD: an antidepressant (SSRI), increased stimulant dosage in the last week of the cycle, or the pill continuously, or maybe even a progesterone antagonist (Sundstrom),” asks Kooij. “Because not estrogen but progesterone seems related to the negative effect on mood in the last phase of the cycle.”

Next Steps

Watch an on-demand replay of this ADDitude webinar hosted by Jayne Singer, Ph.D., titled, “The Unspoken Truths of Postpartum Depression: Help for Women With and Without ADHD”
Could you be showing signs of PMDD? Take this test and share the results with your doctor for further discussion and analysis.
Could you or someone you love be showing signs of postpartum depression? Take this test and share the results with a medical professional for further discussion and analysis.

We Demand Attention: A Call for Greater Research on ADHD in Women

Intro: Top 10 Research Priorities

Sources

¹Reilly, T. J., Patel, S., Unachukwu, I. C., Knox, C. L., Wilson, C. A., Craig, M. C., Schmalenberger, K. M., Eisenlohr-Moul, T. A., & Cullen, A. E. (2024). The prevalence of premenstrual dysphoric disorder: Systematic review and meta-analysis. Journal of affective disorders, 349, 534–540. https://doi.org/10.1016/j.jad.2024.01.066

²Dorani, F., Bijlenga, D., Beekman, A. T. F., van Someren, E. J. W., & Kooij, J. J. S. (2021). Prevalence of hormone-related mood disorder symptoms in women with ADHD. Journal of psychiatric research, 133, 10–15. https://doi.org/10.1016/j.jpsychires.2020.12.005

³Bauman, B. L., Ko, J. Y., Cox, S., D’Angelo Mph, D. V., Warner, L., Folger, S., Tevendale, H. D., Coy, K. C., Harrison, L., & Barfield, W. D. (2020). Vital Signs: Postpartum Depressive Symptoms and Provider Discussions About Perinatal Depression – United States, 2018. MMWR. Morbidity and mortality weekly report, 69(19), 575–581. https://doi.org/10.15585/mmwr.mm6919a2

⁴Andersson, A., Garcia-Argibay, M., Viktorin, A., Ghirardi, A., Butwicka, A., Skoglund, C., Bang Madsen, K., D’onofrio, B.M., Lichtenstein, P., Tuvblad, C., and Larsson, H. (2023). Depression and Anxiety Disorders During the Postpartum Period in Women Diagnosed with Attention Deficit Hyperactivity Disorder. Journal of Affective Disorders. https://doi.org/10.1016/j.jad.2023.01.069

⁵Bartelt K, Piff A, Vitek G, Barkley E. Maternal ADHD Correlated with Increased Risk of Postpartum Depression. Epic Research. https://epicresearch.org/articles/maternal-adhd-correlated-with-increased-risk-of-postpartum-depression.

⁶Eisenlohr-Moul, T., Divine, M., Schmalenberger, K. et al. (2022). Prevalence of lifetime self-injurious thoughts and behaviors in a global sample of 599 patients reporting prospectively confirmed diagnosis with premenstrual dysphoric disorder. BMC Psychiatry 22, 199. https://doi.org/10.1186/s12888-022-03851-0

⁷Tiranini, L., & Nappi, R. E. (2022). Recent advances in understanding/management of premenstrual dysphoric disorder/premenstrual syndrome. Faculty reviews, 11, 11. https://doi.org/10.12703/r/11-11

⁸Eisenlohr-Moul, T., Divine, M., Schmalenberger, K. et al. (2022). Prevalence of lifetime self-injurious thoughts and behaviors in a global sample of 599 patients reporting prospectively confirmed diagnosis with premenstrual dysphoric disorder. BMC Psychiatry 22, 199. https://doi.org/10.1186/s12888-022-03851-0