Decades of undiagnosed ADHD in Gen X girls created a “lost generation” of women

How ADHD symptoms impact us throughout our lives, from puberty to menopause

Over the past year, while interviewing dozens of women for a book I’m working on, I noticed an interesting pattern emerge: over and over again, women told me — unprompted — that they’d either been diagnosed with ADHD (attention-deficit hyperactivity disorder), or they believe they have it. In total, over a quarter of the Gen X women I’ve spoken to, from all different backgrounds and different parts of the country, attributed their struggles in school, their distraction and disorganization, and their ability to hyperfocus to ADHD. Many of these women said that they have come to view ADHD, the bane of their existence growing up, as the secret sauce to their uniqueness and success as adults. And, like me, all of these women have been on a long and often painful journey from troubled kids to functioning adults.

It might seem strange that ADHD is something women in my generation haven’t discussed much given that neurodiversity is in the zeitgeist right now, especially on social media, but back in the 1970s and 1980s, Gen X girls with ADHD (ADD was omitted from the DSM-5 in 1987 after researchers didn’t find significant differences between the two types) were rarely diagnosed or treated. In fact, 40 years ago, the ratio of ADHD diagnosed boys to girls was less than 10 to 1. Instead of giving girls the tools they needed to navigate the system — namely the educational system — we were forced to figure it out on our and learn to conform to a society that wasn’t built for us; when we failed, we were punished. As a result, many girls internalized their ADHD symptoms as personal flaws and never received the medical care they needed and deserved. The more girls like me struggled to meet the expectations of teachers, peers, and parents, the more shame we felt about our perceived inadequacies.

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My conversation with Lisa Ling, American journalist and television personality, about how she views her ADHD

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As far back as I can remember, I’ve struggled with profound, debilitating ADHD, a chronic, neurobiological disorder that affects the brain structurally and chemically. In kindergarten, I couldn’t stay in my seat, I distracted other kids with my talking, and I didn’t follow the rules. As I got older, my impulse control issues got worse, and I started struggling with symptoms of common ADHD comorbidities like OCD and generalized anxiety. I had physical tics, like repetitive blinking and throat clearing; my separation anxiety made me flee friends’ sleepovers in the middle of the night; I compulsively picked at my skin, leaving open sores on my scalp. And on top of all that, there was disorganization, impatience, inattentiveness, emotional fluctuations, and dyscalculia (math dyslexia, an ADHD-related learning disability). I started failing classes in eighth grade, and barely managed to graduate from high school and college. I was viewed as the “weird girl,” not just at school, but at home, too.

Today, more girls are getting diagnosed with ADHD (the ratio is now somewhere between 4 to 1 and 2 to 1), but boys are still more than twice as likely to be diagnosed with ADHD than girls. This chronic underdiagnosis and undertreatment among girls is not because they’re less prone to the disorder, but because it presents differently based on gender. Of the three subtypes of ADHD – inattentive, hyperactive/impulsive, and mixed – girls often have inattentive, a type that’s easier to mask. Girls with ADHD who aren’t treated are at higher risk for self-harm and suicide attempts, for risky sexual behavior that leads to strikingly high rates of unplanned pregnancies (more than 40 percent vs 10 percent for young women without ADHD), and they’re significantly more likely to experience major depression, anxiety, and eating disorders than girls without ADHD.

And then, when those girls become women, they still typically don’t receive an accurate diagnosis of ADHD until their late 30s or early 40s. Just as women who are diagnosed start to wrap their arms around the disorder, the hormonal changes they experience, which can span two decades, can worsen their symptoms. Many women after age 50 with ADHD report feeling more overwhelmed, inadequate, misunderstood, and distressed than ever — and at a time in their lives when they often have the greatest demands on their energy. In fact, half of women recently surveyed said memory problems and feeling overwhelmed are “life-altering” in their 40s and 50s, and over 80 percent said they experienced at least some of their ADHD symptoms for the first time in perimenopause and menopause.

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Lisa Ling on the system she designed for herself to cope with the struggles of ADHD.

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When I went through menopause at age 49 I also felt my symptoms worsen. Even though I’d found ways to cope without taking medicine for decades (not by choice, but because my parents wouldn’t allow me to), suddenly my strategies for overcompensating no longer worked. My brain was foggy, I had a hard time remembering details and thoughts without writing them down; my hyperorganization gave way to chaos, and I started feeling anxious, especially in the middle of the night. I was prescribed Adderall, but even in the smallest doses, it made me feel nauseous and out of it. Ultimately, what did help me was starting hormone replacement therapy — the increase in estrogen and testosterone helped me regain clarity, and the progesterone helped me sleep. But there are many treatment approaches to help manage ADHD symptoms in women, including:

• Stimulant medications: Stimulant medications are the traditional treatment for ADHD. One recent study of ADHD medication showed women were the fastest-growing population. Between 2008 and 2012, the number of Americans using medication to treat ADHD rose 36 percent; among women aged 26 to 34, the figure rose 85 percent.

• Non-stimulant medications: This includes some antidepressants as well as non-stimulants specifically made for ADHD. Non-stimulant medications for ADHD include Strattera, Qelbree, Kapvay, Tenex, Bupropion, and Effexor. Non-stimulants like Strattera and Intuniv have been found to improve symptoms of ADHD, reduce oppositional behavior, and have fewer side effects compared to other medications.

• Therapy: Research shows that therapy, with or without medication, can be an effective part of treating and managing ADHD symptoms by helping patients learn new ways to control and manage their symptoms. It can also address the low self-esteem that many people with ADHD struggle with.

If you’re a middle-aged woman who may have ADHD but hasn’t yet been diagnosed, remember that the disorder doesn’t necessarily resolve with puberty. In the 1980s, researchers thought ADHD was solely a childhood disorder, but they now believe it persists into adulthood in the majority of cases. Medication and treatments aren’t a cure-all, but when paired with a diagnosis — no matter how late in life — they can help make the symptoms of ADHD more bearable and less shameful.

Are you a woman over 50 who has been diagnosed with ADHD, or do you think you’re neurodiverse? Do you take meds? If so, when did you start and did it help you? If not, how are you managing your ADHD? Tell me about it and give some suggestions in the comments!

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