Hyperfocus: “Who are we missing?” One doctor’s lifelong fight for women with ADHD

Dr. Kathleen Nadeau is someone who I’d call one of the godmothers of ADHD in women. She was one of the first people to stand up to the medical establishment and say, “Yes, ADHD affects women and girls, and we need to do something about it.”

She persisted against the gatekeepers who’d call her and her peers “ADHD wannabes,” responding to their dismissal by writing books, conducting research, and being fierce advocates. 

Dr. Nadeau is also one of my personal heroes, and someone I’ve looked up to for years. That’s all to say: I’m very excited to share with you this week’s episode of Hyperfocus. 

Listen or watch as we discuss the history of ADHD in women and girls, what the DSM misses on ADHD, gender inequality in the medical community, and more. 

We love hearing from our listeners. Email us at hyperfocus@understood.org.

• Dr. Nadeau’s biography at The Chesapeake Center

• MissUnderstood: The ADHD in Women Channel

• What is the ADHD tax?

(1:55) Dr. Nadeau’s early days and “ADHD wannabes”

(14:33) How should we diagnose ADHD in women?

(16:30) Women being shut out of the medical establishment

(20:25) “Ask the women”

Rae: Who are we missing? It's a question Dr. Kathleen Nadeau, a clinical psychologist and founder of the Chesapeake Center for ADHD, has been asking for decades. Early on in her career, when ADHD was still ADD, Dr. Nadeau noticed that the patients who came to her for treatment were almost always young, male, and hyperactive. Who are we missing? She knew the answer. Adults, girls, and women, a lot of them inattentive, overlooked, and untreated.

Alongside other women, including her long time writing partner, Dr. Patricia Quinn. Dr. Nadeau began raising the question amongst her peers at conferences and research meetings and conversations. But in her field, dominated as so many are by white male researchers, she and her colleagues were brushed off, called ADD wannabes, and told they were making a fuss over nothing. Basically "Cool out, quiet down."

Instead, they wrote books. They published papers, did studies, started treatment centers, and kept pushing. It can be easy to stand on the shoulders of progress and forget to look down. I try not to. The work that Dr. Nadeau and her colleagues have patiently, diligently been doing for decades has quite literally changed and sometimes saved the lives of thousands of women and girls with ADHD. I know. I'm one of them.

And 40 years in, Dr. Nadeau is far from done. She's still raising her voice. And I wanted to know what those years had been like from her perspective and what she thinks we're still missing. Today on "Hyperfocus," one of the godmothers of women in ADHD, Dr. Kathleen Nadeau.

I am here with one of my, and I hope I don't make you blush when I say this, longtime heroes Dr. Kathleen Nadeau, who is one of the pioneering researchers and authors who focuses on girls and women with ADHD. Dr. Nadeau, welcome to the show.

Kathleen: Oh thank you for having me. As you could well guess, this is one of my favorite topics.

Rae: Well, I want to jump in if it's OK with you. I have a question and it's sort of more of like a "Can you tell me a story," which is you've been doing this for how long?

Kathleen: 40 something years.

Rae: 40-something years. Wow. So, my whole life, basically and I would love to hear a little bit about your career. How did it start? How did you get into this? And what have you seen over those 40 years?

Kathleen: Well, if you had asked me in grad school if I was going to end up being a specialist on, we didn't call it ADHD in those days, we called it ADD, I would have said, "You're crazy," because what we thought ADD was just hyperactive little boys that were, you know, posing a lot of difficulties to their parents and their teachers, and we believed they would outgrow it by the time they hit puberty, and the whole deal was just "Let's manage their behavior until they outgrow it." And nothing could be further from the truth. But I didn't know then.

And when I graduated and went out into practice, I had a general psychology practice and absolutely loved it. I loved the variety of people and had no particular focus at all on ADHD. And so, I would say I'm an accidental ADHD specialist in that I was in a general group practice and suddenly our phone began ringing off the hook from pediatricians' offices asking, do we know how to diagnose ADD, as we called it then, because we sure don't know how to diagnose it and parents are pounding on the door wanting to get their kids in for diagnosis.

And the reason that they were asking for that is that suddenly there was public law that allowed accommodations and supports to be available in schools for children who had an ADD diagnosis. And before then, if anything, parents didn't want their child diagnosed because they didn't want to, quote, put their child on medicine. And the only medication around at the time was Ritalin and they didn't want that, so why get a diagnosis? And all of a sudden there was a very good reason to get a diagnosis.

And so, we were drowning in ADD evaluations of hyperactive little boys. And what became so evident to me as we were diagnosing all this little boys and talking to, it was mostly mothers that were bringing them in, is that they were telling me "I was a lot like that as a kid and my brother was exactly like he was. But I was a lot like that."

Rae: The moms were saying this.

Kathleen: The moms were saying that, or they were saying, "You know, he's just the way my husband says he was." And it just became very evident in talking to them was a lot of those mothers were struggling with attention and memory. So, I made a shift from diagnosing little boys, where all that was available was really kind of behavior therapy and telling schools and teachers about accommodations. And we were just starting to figure out the accommodations because there hadn't been any accommodations for ADHD, you know what would be helpful?

And suddenly I became very aware of the intergenerational aspect of ADHD because I was talking to so many parents and not many years after I started diagnosing the kids, I edited one of the very first books on adult ADHD because it was just so clear that it doesn't go away. You don't outgrow it. It just starts to look different.

And in the mid-nineties, there was a sudden explosion of awareness of adult ADHD. And there were articles in the Wall Street Journal and the New York Times and every magazine you could name and a book by Hallowell and Ratey called "Driven to Distraction" came out in 1995, and suddenly, you know, the cork was out of the bottle and everybody realized, yes, adult ADHD exists except to this day, we're still stuck with those diagnostic criteria that we developed in observing hyperactive little boys.

And we sort of added some inattentive symptoms, but they were still child focused symptoms. And we're stuck with that to this day. And the National Professional Organization for Attention and Related Disorders (APSARD) is only now beginning to develop recommendations for adult criteria. But even so, they're still not recommending that there any gender differences.

Rae: So, gender differences is something I want to ask you about because you're saying people started to accept that adults have it.

Kathleen: Yes.

Rae: But when you started your work, I couldn't help but notice you kept saying little boys.

Kathleen: They were. They were all little boys. Little boys. That's who we noticed. And we began, it's been fascinating to see the evolution of how we see ADHD, because the predominantly inattentive type of child with ADHD was a second iteration and there was a lot of debate is, is this really the same disorder? Because it looks so different, and these kids or quiet and spacey and looking out the window and these kids are over here throwing spitballs and arguing with the teacher and getting in fights on the playground, how could that possibly be the same disorder?

But the fact that we started recognizing that there was a predominantly inattentive type allowed girls to begin to be diagnosed because that was more descriptive of them. I mean, just biologically, nothing to do with ADHD. Biologically boys are more physically active than girls. And the discrepancy is even greater when you're looking at activity levels and ADHD.

Rae: You said a lot of the moms that came in were saying like, "Oh I struggled with this, I felt this way." But it still sounds like a lot of the focus was on boys. And in no small part, am I right about this? Because of the criteria that were in the DSM, and I want to take a stop here and ask if you could just explain to me and for our listeners what the DSM is.

Kathleen: Well, the DSM is I call it the American Psychiatric Association Bible. It is the Diagnostic and Statistical Manual of Mental Disorders. And we're now on the fifth edition. And the editions come out very irregularly, but I think we're overdue for one. So, your question is a great one because guess what happened when we started recognizing adult ADHD in the mid-nineties? a few universities opened adult ADHD clinics for the very first time and it was a great opportunity to do research on adults. You know, if you opened a clinic, you would have this steady flow of people that you could study, gather statistics on.

And what happened was, significantly more women than men sought a diagnosis at those adult ADHD clinics. Now, a lot of people say, "Well, that's just because women are more comfortable seeking help than men." You know, that that was a real exaggeration of the ratio of women to men. And indeed it was because a lot more women than men sought services. But it became so immediately evident that women recognized themselves.

And then, sort of started looking backwards over their lives and thinking, "What was I like as a five-year-old, a ten-year-old, 15-year-old?" And we began to get a picture of what it's like growing up as a female with ADHD. So, I vividly remember, maybe two years after my book on adult ADHD came out, I was in New York City for a conference and having lunch with a friend, and so she said, "Well, what's your next project?" Because I think my focus has always been on who are we missing?

Rae: Yeah.

Kathleen: And so, literally at that lunch, I said, "I think we're really missing the women and girls." So, I'm fascinated by what's happened once these adult clinics have opened. And that is literally the moment I turned my focus to women and girls and had a long time friend and writing partner who's a developmental pediatrician, Patricia Quinn. She's wonderful, and she was really involved in some of the earliest research on ADHD when she got out of medical school. So, she's been in the business longer than I have.

And we started with Dr. Ellen Littman. She was our third co-author writing books, "Understanding Girls with ADHD," and then "Understanding women with ADHD." And those books came out in the late 90s. And what was really funny is that Pat Quinn and I would go to ADHD conferences and would be teased by our male colleagues about, "Oh you're just ADD wannabes. You know, you just want to join the club. And you know, whatever you have is some very pale and insignificant version of what guys struggle with."

Rae: Oh.

Kathleen: Well, and I could understand why they were saying that because it was still viewed as a disruptive disorder.

Rae: Yeah.

Kathleen: You know, with behavior problems and anger management problems. And so, we were if that's what it was, we were a very pale version of that. But interestingly, as research started coming out, a lot of it coming out of Scandinavia, we began to realize that the consequences for women with late-diagnosed, under-diagnosed ADHD were really significantly more severe than for males. We found that suicidality, suicide attempts, psychiatric hospitalizations were significantly more common for women with inadequately treated ADHD than for men. And I think that even to this day, I don't think many people realize that even though that research is a quarter of a century old now.

Rae: So, if you could write it, if they were your criteria, what would the criteria for women in the new DSM look like?

Kathleen: Well, that's a good question, and I don't have all the answers, but I would certainly include self-esteem issues, low self-esteem. Because years ago, Paul Wender wrote one of the very first self-report questionnaires for adult ADHD. And he mentioned in his research that the one big difference he saw in responses to his questionnaire had to do with low self-esteem. That is not typically, I mean, certainly there are men with low self-esteem; it's not a binary system, but it's almost universal for women to feel badly about themselves.

I think that we don't emphasize nearly enough the critical importance and the long standing difficulty that women experience in feeling connected with and accepted by other females. I mean, that's why all these women at my clinic said, "Let's do this again. This was wonderful. I feel comfortable. We can laugh at our dilemmas as opposed to feeling, my God, they're going to think I'm such a mess if I really tell them what I feel."

Rae: I never feel better than when I'm talking to other women with ADHD.

Kathleen: Yeah. So, social connectedness, low self-esteem, certainly fluctuation of symptoms throughout the menstrual cycle and starting at perimenopause. I think those would be crucial. And just the emphasizing the state of anxiety and overwhelm that I see females from the earliest age sort of living in that state.

Rae: Yeah. It's wild to me how little we still seem to know about women and girls that you and I can hear in what you're saying, that that's not an accident. The research was there for certain things, but it sounds like a lot of it was muddled with a little bit of sexism maybe coming from the overall research community and a little bit of just lack of understanding of how the disorder looks in women and girls. Am I putting that out correctly?

Kathleen: Well. I guess you might call it sexism. I don't think there was deliberate sexism, but there's a long history in the history of medicine of an incorrect assumption that if you study a male population, we did this for heart disease and our findings pertain equally to women and we subsequently found out that's not true at all, that women's bodies are different in many significant ways.

But that's been a longstanding pattern that we'll study the guys and it pertains to the women, and we're going through that now as we develop the adult ADHD criteria that people are saying "There's not really a need for a different set of criteria, it's the same disorder. And so let's just focus on adults."

Rae: This thinking, the idea that studying one group is as good as studying all groups is endemic to so many things medicine, science, history. It's unavoidable, often invisible, and it can be incredibly destructive. We've seen it again and again. So much so that the list of who gets left behind is almost as familiar as the Pledge of Allegiance. Women, people of color, trans people, and so many more. It's how people get shut out, shut out of research, shut out of treatment, shut out of help. And as Dr. Nadeau learned, these old ways die hard.

Kathleen: My generation is the first generation where lots of women began to go to work full time. And I was in grad school, Patricia Quinn, my longtime colleague and writing partner, was at Georgetown Medical School. And in the whole medical school, there were exactly four women. Now, by contrast, there are more women than men in medical school.

But back then, so we were the pioneers and we were out to prove that we were superwomen and could do it all because we got lots of messages that "What are you thinking? Aren't you going to have a family? Aren't you going to stay home with your family? Why, you're taking up a grad school slot or a medical school slot that could be filled by a man.

Rae: I've heard that exact story before. My husband's mom is a pediatrician, and she said that when she was sitting in one of her classes, a boy leaned over to her and said, "You're taking someone else's seat."

Kathleen: I remember back people in my family asking me, "Don't you like children?" Because I'd been married for a number of years. And I, of course, wasn't through this grad school, and I would say, "Well, don't you think it'd be a really good idea for me to finish my degree first?"

Rae: I mean, you know, when you hear that I can feel like women of my age, we have our own challenges, but it's an easier road. And when ADHD comes into the picture, it feels like it complicates it even more because I can at this age now say, "You know, I have ADHD. Here's why it's hard for me. This is what I'm working with. Here's what I need." I've learned to do those things for myself. But for a long time that wasn't really an option for a lot of women.

And I guess coming back to the DSM, I can't help but feel like, if the experiences of women, the ones that we're talking about right now, aren't included or aren't considered, maybe not included, but considered that it is a different way of walking through the world. And you do have different standards, whether they're reasonable or set by people who shouldn't be setting them or not.

Kathleen: But I really think in a way that women and I, because I've been watching this for so long, it pleases me greatly that women now are starting to say, this is ridiculous.

Rae: Yeah.

Kathleen: It's ridiculous for all women to be expected to be the whole executive in charge of the meals, the children, the household, the schedule, and be pursuing whatever full-time work she has. But it's incredibly ridiculous for women with ADHD. And I think the impossibility of it is starting to really create a movement. And I'll tell you a story, something that just happened a week ago at my clinic. I have a large clinical staff and a lot of people on the staff have ADHD themselves, and I think they're very good at helping other people with ADHD because they really get it. They have it. They have children that have it. You know, they've lived it. It's not just academic knowledge about ADHD.

So, I thought as a baby step toward developing female criteria, what if I got all the women at my clinic together for a focus group who have ADHD themselves and are working, I mean, they're working in my clinic and their mothers.

Rae: That's so cool.

Kathleen: And so, we did that about a week ago. And, you know, these women are so busy that it took us probably 3 or 4 weeks before we could find a time where we could all get on Zoom together. And but we did it. And I had only planned for an hour. They were still talking after an hour and a half. I got all these emails, "This was so much fun. This was great. I think we should do it again" because it was so reinforcing and supportive and understanding that they were all saying, "I know exactly. And let me tell you what happened in my life last week."

They were just, they just couldn't say enough about how impossible their lives were. And I wanted to do this just in a very informal way. And I think we are going to do it again because I want women to identify the most significant challenges in their lives associated with ADHD as the beginning of developing more gender-sensitive criteria. So, let's ask the women what it's like.

Rae: Yeah. That would be great.

Kathleen: I think they know what it's like a lot better that, you know, some kind of psychiatric or psychological researchers.

Rae: Ask the women. This is Dr. Nadeau's radical suggestion. Gathering data from lived experience, asking women of different backgrounds, ages, races and lives what our experiences are like, and folding the information she gets into guidelines for health care providers, the people whose offices we walk into and say, "I need help," to help them truly see the whole picture. Learning from us instead of dictating to us. Essentially asking us the question that she has never stopped asking, "What are we missing?"

Kathleen: I'll tell you an ironic anecdote. And we had a psychiatrist at our clinic for a while. Very highly respected ADHD researcher, psychiatrist. And after he'd been there a couple of years, he would just start bursting out at me "Kathleen, you do not have ADHD" because I had a PhD and I was the head of a clinic and I wrote books. And I, you cannot possibly have ADHD because we have this stereotyped, very narrow, limited version of what it is to have ADHD.

And I wrote a tongue-in-cheek article saying, "Good news, parents, if your child graduates from college, they no longer have ADHD." And I wrote this article completely tongue in cheek because I had gotten in a public debate with another very well-known ADHD writer and researcher in which he refused to continue the diagnosis of ADHD. He insisted that this young woman had outgrown her previously diagnosed ADHD because she was a college grad, because she had a job, she had a social life.

Rae: She should be fine.

Kathleen: She should be fine.

Rae: It's funny. ADHD is the only disorder that I can think of where if you are doing well, people doubt you more.

Kathleen: Absolutely. And so, I said "Good news. She no longer has ADHD."

Rae: You're thriving.

Kathleen: They got a job, but if they get fired, I guess they got it again.

Rae: I feel like it's like you're finally keeping up and people are like, "Great. Seems like you're fine now." So, there goes your support. There goes the understanding. Woo-hoo.

Kathleen: Yeah, that's right. Absolutely.

Rae: I am so grateful to hear this and so glad that someone like you is out there pushing for this and also for everything you've done for 40 years. Your book was one of the first I ever read about ADHD, and it was one of the things that told me it was OK to be myself. And it's very rare that you get to say that to someone. So, thank you.

Kathleen: Well, you're very welcome. And I think you're doing wonderful work too.

Rae: Thanks for listening to this episode of "Hyperfocus." If you have any questions or ideas for future topics, write me an email or send a voice memo to hyperfocus@understood.org.

"Hyperfocus" is made by me, Rae Jacobson, and Cody Nelson. Our video producer is Calvin Knie. Our music comes from Blue Dot Sessions and Justin D. Wright mixes the show. Ash Beecher is our supervising producer. Briana Berry is our production director and Neil Drumming is our editorial director.

This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott, Cocchiere, and Seth Melnick. Understood is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, you can donate at understood.org/give.