ScienceMind, Body, Wonder
Women and girls with attention-deficit/hyperactivity disorder have historically been under and misdiagnosed. Is the world finally catching up?
ByKaelyn Lynch
Published January 16, 2024
At age 22, Rach Idowu was convinced she had dementia. She found herself forgetting birthdays, missing meetings at work, and struggling to manage credit card debt. A Google search suggested that she had early-onset dementia, which her doctor quickly dismissed. It would take her another four years and the assessments of two psychiatrists, but eventually Idowu was diagnosed with ADHD.
Suddenly, everything in her life began to make sense: her constant fidgeting as a child, the caffeine-fueled all-nighters to finish school assignments, taking weeks to answer messages from friends. “It was a massive eureka moment,” Idowu, now 29, says.
Idowu is one of millions of women and people assigned female at birth diagnosed with ADHD as an adult. And while the number of diagnoses among adult women has been rising for decades, 2020 to 2022 saw a massive increase: the number of women aged 23 to 49 receiving an ADHD diagnosis nearly doubled. The COVID-19 pandemic, the rise of telehealth, and ADHD’s popularity on social media have prompted some concern that the diagnosis trend is a fad. But are women being overdiagnosed? Or is the world just catching up?
There are three types of ADHD: hyperactive, inattentive, and combined. Girls and women tend to have the inattentive type, characterized by disorganization, forgetfulness, and struggles with starting and staying on task.
(What role does technology play in rising ADHD rates?)
“They’re more likely to be seen as daydreamers, or lost in the clouds,” says Julia Schechter, co-director of Duke University’s Center for Women and Girls with ADHD.
Even hyperactive or combined-type girls often display their symptoms differently than boys—such as excessive talking, twirling their hair or constantly shaking their legs, and emotional reactivity. “Their symptoms are just as impairing, but can fly under the radar,” Schechter says.
A ‘boy disorder’
When clinical psychologist Kathleen Nadeau co-authored Understanding Girls with ADHD in 1999—one of the first real attempts to characterize how ADHD appeared in young girls—the research community still thought of ADHD almost exclusively as a “boy disorder.”
“We were laughed at during conferences,” says Nadeau, now recognized as an authority on women with ADHD.“They said, ‘We’ve got these guys that are in the principal’s office three times a week, getting suspended and throwing spitballs. And you’ve got these quiet girls making honor roll grades and you think they have ADHD?’”
While that attitude has started to change, the overwhelming majority of research on ADHD has been done in boys and men, leading to the hyperactive, disruptive boy stereotype of ADHD.
Many girls with ADHD excel in school, though it comes at a price—they may get an A on a paper but stay up the night before writing it after being unable to focus for weeks.
“Girls work very hard to hide their problems. ‘I don’t want the teacher to be mad at me, I don’t want my parents to be mad at me,’” Nadeau says. Experts call this masking, or how people socialized as female tend to find ways to compensate for their symptoms due to societal expectations. “They have to put in at least twice the effort of other people if they’re determined to do well,” Nadeau says.
“You can’t let people know that you’re falling apart,” says Janna Moen, 31, a postdoctoral research scientist at Yale Center for Infection and Immunity with a PhD in neuroscience, who was diagnosed with ADHD in her late 20s. Like many girls who go untreated, Moen scored top grades in school and went on to have a successful career, but years of masking her symptoms contributed to her developing mental health and self-esteem issues, and struggling in personal relationships.
Like Moen, who showed symptoms of ADHD from childhood, girls and women are more likely to have their symptoms mistaken for emotional or learning difficulties and are less likely to be referred for assessments. Gender bias also may play a role: in two studies where teachers were presented with vignettes of children with ADHD, when the child’s names and pronouns were changed from female to male, they were more likely to be recommended for treatment and offered extra support.
All these misconceptions mean that girls with ADHD are being overlooked and untreated well into adulthood. As David Goodman, the director of the Adult Attention Deficit Disorder Center of Maryland and an assistant professor at Johns Hopkins School of Medicine, points out, the ratio of boys to girls with ADHD in childhood is about three to one, while in adults, it’s about one to one, suggesting that ADHD prevalence is more equal across genders, with women being diagnosed later.
“Children get diagnosed because they’re disruptive and a pain to other people,” Goodman says. “The adults get diagnosed because they’re a pain to themselves.”
A disorder of executive functioning
Ultimately, ADHD is a disorder of executive functioning; the mental processes like planning, working memory, and emotion regulation that govern an individual’s ability to operate.
As women move into adulthood, demands on executive functions grow, and symptoms can become even harder to recognize as ADHD. Hyperactivity may manifest as inner restlessness, inattention may look more like struggling to complete chores or meet deadlines, and impulsiveness can appear as difficulty managing a budget. Despite these challenges, many women with ADHD may appear externally as high-achieving perfectionists. But consequences of a missed or misdiagnosis can be severe.
(Is there a link between ADHD and binge eating?)
Compared to their neurotypical peers, women with ADHD are more likely to suffer from anxiety and depression, substance abuse, and eating disorders. They are also five times more likely to experience intimate partner violence, seven times more likely to have attempted suicide, and have higher rates of unplanned or early pregnancy. One Danish study showed that the risk of premature death in women with ADHD was more than twice that of men with ADHD, potentially due to women being less likely to be diagnosed and receive treatment.
A shortage of ADHD specialists
The explosion in diagnoses coincided with two potentially related factors: the COVID-19 pandemic and the rise of TikTok. One survey found that about 75 percent of newly-diagnosed adults said the pandemic played a role in prompting them to explore an ADHD diagnosis, in part because of more time on social media platforms like Twitter and TikTok. Google search trends for ADHD rose faster between 2020 and 2022 than any other period since 2004, and the hashtag ADHD has amassed 35 billion views on TikTok in the United States in the past three years. Many women report receiving a diagnosis only after self-referring to a mental health professional, some having been spurred by a post on social media.
Even for those who decide to get a neuropsychological evaluation, finding a skilled provider is a challenge.
“Psychiatrists get about half a day of training in adult ADHD over three years,” says Kathleen Nadeau.
For decades the prevailing attitude among psychiatrists was that kids grew out of ADHD. But even though that misconception has been debunked, there are still no official diagnostic guidelines in the U.S. for ADHD in adults.
(If you don’t have ADHD, Adderall and Ritalin won’t work for you.)
An assessment can require several sessions and may include interviewing family members and even looking at old report cards to determine if symptoms were present in childhood.
Finding a provider who can recognize ADHD in women is even harder.
“My doctor told me she didn’t think I had ADHD because I graduated from university and had a job,” Idowu says.
Women are also more likely to have their ADHD mistaken for anxiety or depression. Janna Moen spent almost two decades being misdiagnosed with and treated for major depressive disorder and anxiety, only to find her symptoms resolved once she was treated for ADHD with therapy and medication. Moen thinks her anxiety and depression were more of a response to the pressure she put on herself to appear normal while struggling to keep up.
“Psychiatrists think let’s treat the anxiety, let’s treat the depression. And when those are better, let’s see if there really is any ADHD,” Nadeau says. “When it should really be the opposite.”
Sketchy telehealth ADHD services
With so few skilled providers, ADHD-focused telehealth startups have sprung up the past few years, promoting themselves as a panacea to expensive evaluations and long waitlists.
They advertised heavily on platforms like TikTok and Instagram. Hatie Parmeter decided to give one a try when faced with a four-month wait for an evaluation by a psychotherapist in her rural Wisconsin town. She was skeptical from the beginning.
“It was stupid fast,” she says, noting it took about five minutes for the provider to diagnose her with ADHD and offer her meds. “By the time it was over, I was left feeling that I wasn’t entirely sure it was correct.” Parmeter decided not to take her prescription, and later had her diagnoses confirmed after a proper evaluation by a psychologist.
Some of these companies are now under investigation by the DEA for their lax prescribing practices. “These evaluations were, in my opinion, inadequate,” Goodman says. “Too many people ended up on medication who likely did not have ADHD.”
Goodman and other providers don’t think that misdiagnoses alone can account for the stark rise in women receiving ADHD diagnoses, though. Jennifer Gierisch, associate director of engagement at Duke’s center, notes that since women develop so many coping strategies for ADHD, it can often take a major life event or stressor—transitioning from high school to college, getting a promotion at work, or becoming a parent—for them to finally recognize something is seriously wrong. She thinks the pandemic was a catalyst for millions of women at once.
“All of the ritual and structure that helps people with ADHD stay on track disappeared,” Gierisch says. “The complex scaffolding [women] had built around themselves to fill in those deficits was no longer enough.”
A lag in proper diagnosis
While Schechter praises social media for spreading awareness of ADHD in adult women, she notes it might have contributed to a watered-down image of the disorder.
A 2022 study from researchers at the University of British Columbia, for example, found that half the content of the 100 most popular TikTok videos about ADHD was misleading. “This is not a disorder where you lose your keys sometimes,” Schechter says. “When we reduce ADHD to a social media post, that real functional impairment gets lost in the mix.”
Experts emphasize that attentional issues brought on by the pandemic, remote work, and more time spent on social media are not enough to warrant an ADHD diagnosis.
“Just because you have a hard time working from home, or get distracted by your phone, or can’t do your homework with the TV on does not mean you have ADHD,” Schechter says. “We’re looking for this pattern of symptoms and challenges that have been present across time and across settings.” Gierisch notes that ADHD is ultimately a neurodevelopmental condition that is typically present from birth, and is about 80 percent genetic. While external factors can exacerbate symptoms, it can’t cause them. “Saying, Aren’t we all a little ADHD’ is like saying, we’re all just a little diabetic,” she says.
Ultimately, clinicians like Schechter don’t think social media posts are resulting in a wave of over or misdiagnoses. “The ADHD was always there, we’re just finally catching up and being able to diagnose it properly.”
For women who do receive help, it can be life changing. Idowu says since getting treatment and being on a stimulant medication, she has gotten ahold of her finances, is thriving at work, and has improved her relationships. Her own journey and the lack of available information prompted her to start a popular newsletter, “Adulting with ADHD” in 2020, which she says has helped hundreds of people get diagnosed. “It’s very difficult to exist in a world where you feel like there’s something wrong with your brain,” Idowu says. “There’s a power in just knowing.”
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