In the 1990s, UC Berkeley psychologist Stephen Hinshaw and his colleagues broke new ground when they began one of the few long-term studies of girls with ADHD. Over the years, his findings have helped to change views of how often and how persistently the disorder affects girls and women, and has revealed the distinct challenges they face. In this video, we hear from Hinshaw and clinicians Kathleen Nadeau and Patricia Quinn on what we know about ADHD in girls, and listen to women living with ADHD discuss issues they face and how they cope at home, school, on the job and in relationships.

Read more: Under-diagnosed and under-treated, girls with ADHD face distinct risks

Video Transcript:

Eliana Lipsky: “I decided to own my ADD when I was struggling to get my GRE done. I wanted to pass it. I wanted to be able to pursue higher education degrees, and I could not pass the GRE.”

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For decades, attention deficit hyperactivity disorder (ADHD) was thought to primarily impact boys and men.

Eliana Lipsky: “The first time I tried to take the GRE, which was a reflection of my SAT experience, was when I shut down. I would just go to sleep during the SAT. I couldn’t function and I pretty much bombed that.”

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Now we know that ADHD is also common in women and girls, but is still much less likely to be diagnosed than in men and boys

Eliana Lipsky: “And so I said, ‘OK, I’m going to put all of my heart and soul into this. I’m going to study my heart out.’ And then I couldn’t finish the test. I had 18 questions left on the math section.”

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Many women have struggled for years at school and work without knowing what was wrong.

Eliana Lipsky: “And at 26, I went and got a neuropsych eval, and the moment the ADD test came out and, or you know the questionnaire, and she said, she asked me all these questions like, ‘Yes, yes, yes, these are all issues for me.’ That was the moment I turned to everyone else and I said, ‘Listen, I finally have a name for the things that I’ve been struggling with and I’m happy to talk to anyone and everyone about it, because no one should go it alone.’”

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Why have women with ADHD been “going it alone” for so long?

Stephen Hinshaw (professor of psychology, UC Berkeley): “Midway through my career, I started to doubt what I’d learned back in grad school, that girls don’t get ADHD. It’s anxiety or conduct problems or some sort of moral failing. Girls really don’t get this condition. It’s 10 to 1, 20 to 1. It’s been only in the last several decades that people have said, there’s probably really not 20 boys to every girl with ADHD; there are more boys than girls but not with this preponderance that we thought.”

Patricia Quinn (developmental pediatrician): “ADHD is real. That is a neurobiologic disorder. What that means is, that it’s really the areas of the brain that are controlling attention, concentration, distractibility, that aren’t working in the individuals who have this disorder.”

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We gathered a group of women and girls diagnosed with ADHD to share their experiences and the challenges they face.

Kathleen Nadeau: “What is it like to be a woman with ADHD? That’s a very, very broad question because ADHD impacts absolutely every aspect of our lives. What are some of the biggest challenges?”

Allison Saba: “Time management and just organizing my day, like, I’m ... I want to do a thousand things during the day, and I can only get so much done. And I have to work that much harder to get it done. Just getting places on time, too, is hard, and it impacts your social relationships too with people. They’re like, ‘Why did you why did you come late?’ again and again, and sometimes you can lose jobs.”

Mary Ann Ryan: “It’s hard to even talk about. Look, I’ve been fired from several jobs. Just so much shame. You have so much shame.”

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Dr. Patricia Quinn understands her patients’ struggle with ADHD because she herself has been diagnosed with it.

Patricia Quinn: “Living with the disorder helped me focus on the disorder more, helped me understand when I saw these girls and women in my practice that yes, this is going on, and no one’s paying attention.”

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Many girls with ADHD have gone undiagnosed because their symptoms are often very different than boys’.

Mary Douglas: “For most people are, they’re like, ‘Oh, no way, you couldn’t have this.’ You know, like you don’t do these things. Like, ‘Oh, Mary, you’re fine.’ Actually, I’m really not right now, you know?”

Audry Tafoya: “I was in elementary school in 1982, ’83, ’84. Nobody talked about ADHD especially for girls.”

Isabel Hernandez-Cata: “Women kind of fly under the radar because we don’t always, anyway, manifest the H part.”

Bailey Whiteman: “Anyone who doesn’t look like the stereotypical kid with ADD, ADHD, throwing spitballs in class, running around in circles. I’m, like, I didn’t look like any of those things. I was super-bored in class, I didn’t have friends, I just wanted to read.”

Carmen Shorter: “I was always flying out the window doing anything but this moment, and yet hyperactive, physically active boys would be the first thing to be noticed.”

Bailey Whiteman: “... and I feel like we can continue to be invisible-ized, we can be erased all the time.”

Stephen Hinshaw: “Who gets noticed as having ADHD? The quiet kid in the back of the classroom who can’t focus but isn’t disrupting anybody? The teacher breathes a sigh of relief. What about the impulsive, active, fidgety, often boy who’s making learning pretty tough for everybody? So this is what we call ‘referral bias.’ You get referred if you’re noticeable.”

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In 1997, Dr. Hinshaw and his team set up an annual summer camp for groups of girls with and without ADHD to begin tracking their progress.

Stephen Hinshaw: “This is now the largest study in the world of girls with ADHD over time and we’ve learned a tremendous amount.”

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More than 20 years later, he is still collecting data on the same young women into adulthood, revealing dire consequences for girls and women left undiagnosed and untreated.

Mary Ann Ryan: “I had fewer friends when I was younger. I mean, I struggled with my weight, I struggled with depression…”

Allison Saba: “I got left out and bullied a lot. Just picked last.”

Stephen Hinshaw: “Girls with ADHD have particular problems that boys don’t have. For example, girls with ADHD, from our own research, appear to be more likely to be rejected by their girl peers than boys with ADHD.”

Ainsleigh Pocock: “I’ve gotten in fights with my friends because I just acted out and I got in a fight. Like, I’ve lost friends because of it.”

Mary Ann Ryan: “College ... I’m amazed that I finished college because it was so bad. It’s brutal.”

Allison Saba: “It’s very brutal, and yeah it caused me a lot of anxiety and depression growing up.”

Stephen Hinshaw: “The big risk for girls with ADHD, that I think our research team was one of the first to uncover in detail, is that by middle and late adolescence, with the social rejection, with a continued impulsivity, with the tendency both to get depressed about your life, and to still act out against norms, the risk for cutting, self-mutilation and even suicide attempts is tragically high.”

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High rates of social and peer rejection were strong predictors of the most tragic outcomes.

Stephen Hinshaw: “We found these shocking statistics. Nearly one girl in four by 19 or 20 with early ADHD had made a serious attempt on her life. And over half were engaging in moderate to severe forms of self-injury — cutting and burning oneself.

“What percentage of our comparison group had had an unplanned pregnancy? Ten percent. What percentage of our girls with ADHD? Forty-five percent — four and a half times the risk. So we’re focusing on some of the really difficult findings. But ADHD ups the risk for difficult outcomes, but it is not inevitable.”

Bailey Whiteman: “So being diagnosed in my late 40s, just like, it’s not like one lightbulb, it’s like a whole like set of floodlights, where you’re like, ‘Oh, I see.’ And so then you add in the right medication, I was, like, my brain is really slow and steady and I can pay attention. Is this what other people’s brains are like?”

Carla Swana: “I think that finding out on my own has really helped a lot of things in my life. A lot of my friends still think I’m very organized and everything, and I’m thinking, if they only knew, you know? But I’m not as overwhelmed as I was.”

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The good news is that there are effective treatments for girls and women who are diagnosed with ADHD.

Patricia Quinn: “This is a very hopeful disorder in that once it’s diagnosed, we know there are lots of things we can do to help you.”

Kathleen Nadeau: “It’s extremely, extremely therapeutic for people, but especially I find for females, to have a place to come, in a group setting, where they feel understood, where they don’t feel judged, where they can learn from each other, as well as from the professional that’s facilitating the group, how to work with their ADHD.

“If you had just one piece of wisdom to offer to a girl that’s maybe just starting to learn that she might have ADD, what kind of advice would you give?”

Ainsleigh Pocock: “Don’t be afraid to tell people. Because it’s not something you should be ashamed of.”

Caroline Alsina: “So for me, I’m medicated and it’s a blessing. I love my medicine.”

Stephen Hinshaw: “We think that treating kids with ADHD from early ages is going to be preventive. We find the best results consistently when the right medicines are paired with the behavioral or family or school or cognitive behavioral treatments, so that you get symptom reduction and the building of competence.”

Patricia Quinn: “One program doesn’t fit all. We need to tailor these programs to where our patients are, what their primary target symptoms or target problems are right now, and then work with them as they move along and as they move on.”

Mary Ann Ryan: “My goal is to really take responsibility for the challenges that I have, as if I had a wheelchair. So I have to make sure there’s ramps, I have to make sure there’s someone who can help me, and so you may not see that, but I’ve set up all these things in place, and that’s the freedom it gives. Like, oh, maybe I can do some of these things I didn’t think I could do, because I now put those ramps up that helped me get up the stairs.”

Stephen Hinshaw: “Many of our girls with ADHD have overcome a lot of their symptoms. Many of them are doing well in relationships and on the job. We’re scouring our data now. It will look at the factors that predict resilience.”

Eliana Lipsky: “As long as you figure out your system, for how to function in the job that you have, or to do what you love, you’ll be able to offer everything you have to the world. But if you don’t figure out your system, and you try other people’s systems and it doesn’t work for you, but you keep trying it, that’s not going to work. You have to figure out what works for you.”