Women often aren’t diagnosed with attention-deficit/hyperactivity disorder until they begin to wonder what’s wrong with them. Maybe once-simple tasks feel more difficult, or organization takes a dive. Or maybe their child was evaluated, and they thought, “That sounds like me.” Maybe estrogen is declining during perimenopause, and issues with executive function are amplified. So they begin to seek professional help or see their own stories reflected in others.
These are some of the ways women may receive a diagnosis after childhood, says psychotherapist Sarah Greenberg of Understood.org, a nonprofit that focuses on learning differences. And while diagnosis is a significant step in their journey, day-to-day life may remain challenging as they find the treatment options that work for them.
Data from the CDC show that 15.5 million adults in the US have ADHD, and more than half were diagnosed in adulthood. Adults may struggle with executive functioning, managing attention and behavior, restlessness, and symptoms that can change over time.
Differences in boys and girls
To understand why women are diagnosed later in life, it helps to look at how ADHD presents differently in boys and girls. “Girls tend to present with inattentive symptoms rather than hyperactive/impulsive symptoms, which are more prevalent in boys. Hyperactive and impulsive symptoms tend to be more disruptive, causing parents and teachers to seek clinical attention,” said Dr. Sandra Loo of the University of California-Los Angeles. “So in childhood, males are diagnosed with ADHD three to four times more often than girls.”
She explained that inattentive behaviors, such as zoning or spacing out, can be overlooked, as well as being distracted or disorganized, and might not be noticed if children aren’t being disruptive or if parents are compensating. Additionally, girls may mask, or hide, their symptoms as a result of sociocultural expectations, which may prevent parents and teachers from noticing their challenges. Because symptoms must appear across settings like home and school, girls may not meet the criteria for diagnosis if they mask their symptoms, Loo added.
Effects of delayed diagnoses
A Scientific Reports study and research in the Journal of Attention Disorders showed women overwhelmingly said that their delayed diagnoses had a major impact on their childhood and adulthood, specifically around sense of self, career, mental well-being and relationships. They reported being dismissed, either in medical or nonmedical situations, and their symptoms misattributed to anxiety, hormones or depression. One participant in the Scientific Reports study said that “professionals were … too quick to label me as depressed and anxious instead of investigating and listening to me.” Outside of medical contexts, they reported being dismissed as being poorly behaved, difficult or inattentive.
Self-perception also was affected. Many participants said they felt different from others and couldn’t understand why they struggled before they were diagnosed, which led them to be self-critical and have low self-esteem. “[H]ad I been diagnosed as a child, I would have had more understanding of what was causing issues as I got older, I could have identified supports or coping mechanisms sooner, and I would have spent less time developing major issues with self[-]confidence and sense of self,” another participant said.
Research from Understood.org also highlighted the impact of delayed diagnosis or misdiagnoses. Women may not recognize that ADHD is neurobiological, which can lead them to consider their challenges as character flaws, with 89% of women saying their self-confidence is damaged.
After diagnosis
Even though an ADHD diagnosis is a critical milestone, the journey isn’t over. “It’s often a mixed experience, but there’s a lot of positivity that can come with a diagnosis. Hopefully, it quiets a lot of that really loud self-critic that we tend to see pre-diagnosis,” Greenberg said. “Like, ‘What’s wrong with me? Why am I like this? No one else is like this.’ Actually, no. Millions of other people are sharing the same challenges.”
As women build their toolbox to manage symptoms and find the treatment approach that works for them, some may turn to medication, while others may find a different approach is better. It’s all about finding the right balance, even if progress isn’t linear, Greenberg added. Managing expectations and recognizing that ADHD is a lifelong journey are important, too.
“I think as long as our expectation isn’t that high – ‘I’m going to get that diagnosis and everything’s going to fall into place’ or ‘I’m going to experience progress and then have no setbacks’” – women can be prepared for the journey ahead,” she said.
Women in the Journal of Attention Disorders study expressed relief afterward, saying they felt validated, had more control over their symptoms, and saw their situations as more changeable. They also reported better self-acceptance and more self-awareness.
Diagnosis also can help address identity disruption, a common experience for women with ADHD that leaves them questioning their worth and discovering that how they have masked to compensate for challenges no longer works, Greenberg said. And like other research shows, diagnosis can help them rebuild their sense of self. That may mean returning to the traits that make them who they are, such as compassion, kindness or humor and leaning into them, so they can put themselves into situations where they thrive instead of living in areas that are challenging for them, she added.
More resources are needed
There isn’t enough research about ADHD in girls, specifically around stimulant response, adverse side effects and treatment interactions during hormonal transitions, Loo said. The Scientific Reports article also noted the lack of research: “[T]here is a higher ratio of boys to girls in clinical population samples compared to community populations, also indicating that girls are grossly under-referred and therefore underdiagnosed.”
Greenberg said that Understood is “investing more in building tools designed for the female ADHD brain and the experiences of women with ADHD.” She noted that most tools are built around research that is largely focused on men and boys, leaving a gap for studies to support women and girls.
“I’d like to see, first of all, more tools designed specifically for women with ADHD and then outcome studies on how are these actually working for women with ADHD? Are they having the intended outcomes?” Greenberg said.