The “devastating” findings of a decades-long ADHD study
Editor's note: This episode includes discussion of suicide and self-harm. Please take care when listening and skip this one if you need to.
Dr. Stephen Hinshaw is one of the leading voices when it comes to ADHD in women and girls.
That’s in large part due to his work on The Berkeley Girls Study. (Its full name is The Berkeley Girls with ADHD Longitudinal Study, but most people know it by that shorthand or acronym: The BGALs Study.)
Under Steve’s leadership, researchers began studying 140 girls with ADHD and a control group of nearly 90 girls without it. They’ve been following these girls into their adulthood, producing a reams of information that has helped shape current understanding of ADHD in women and girls.
That said, Rae Jacobson had plenty of questions for Steve: Why did you want to study ADHD in girls at a time when it was typically seen as a boys’ disorder? Why is it that one type of ADHD seems to lead to such negative outcomes? What do we do about the stigma that still surrounds the disorder?
We love hearing from our listeners. Email us at hyperfocus@understood.org.
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Timestamps
(2:20) The beginnings of The Berkeley Girls study
(4:26) Combined-type ADHD and negative outcomes
(9:18) Self-esteem, ADHD, and girlhood
(16:20) ADHD as a “trend”
(20:40) What to do about ADHD stigma
Episode transcript
Rae: Hey, before we begin today's episode, I want to say that in it we talk about suicide and self-harm. So, please take care when listening and skip this one if you need to.
In the late 1990s, 228 girls entered a study at the University of California in Berkeley. 140 of them had ADHD. The other 88 didn't. They were the control group. It was called the Berkeley Girls with ADHD Longitudinal Study. Kind of a mouthful. So, for short, it's known as the Berkeley Girls or The BGALs Study.
In the study, researchers closely study each of these girls at six-week summer camps across the '90s. At the camps, the girls did all normal camp things: they went outside, played sports, made art, put on plays. But the counselors were taking close notes on each kid, not knowing whether she had ADHD or not. And every camper was given a neuropsychological assessment.
Researchers followed up with the girls into adolescence and adulthood. They're now all in their 30s. A team of scientists behind the study was developing one of the most groundbreaking and influential collections of research ever performed on women and girls with ADHD. And behind it all is a psychologist named Dr. Stephen Hinshaw.
In the '90s, ADHD was still commonly thought of as a boys' disorder. Girls barely even made the conversation. But The BGALs Study was a milestone. It helped establish ADHD in women and girls as a serious issue that needed to be addressed.
It's very rare that you get to meet somebody whose work has actually changed your life. As a woman with ADHD, The Big Gal's findings have had a huge impact on the way people see ADHD in women and girls and the things that we know and understand about ourselves. I'm a pretty big fan of Stephen Hinshaw, as you may be able to tell. And when we started the podcast, I was extremely psyched to have him on as one of our first guests.
I wanted to know more about how he got into the work that he does and ask him about how he feels about the way ADHD is perceived today. What's changed? What hasn't? And how far we still have to go. This is "Hyperfocus" and I'm Rae Jacobson. Here's my interview with Dr. Stephen Hinshaw.
(2:20) The beginnings of The Berkeley Girls study
Stephen: So, back in the day, in the '90s, I was doing a lot of clinical trials and summer camps where you can study natural behavior pretty cheaply, using as participants boys with ADHD because that's who got diagnosed back then. And I got curious because I knew clinically that girls can and do develop ADHD. And when they grow up, they're women who still have ADHD, and wrote a pretty major grant to the National Institute of Mental Health back in the mid-nineties.
It took two tries and in the second try they said, "Wow, why don't you go ahead and run these summer camps for grade school girls with ADHD? We can't give you a long-term follow-up until you're productive and publish and we see what the lay of the land is." And so, now, what we affectionately call The BGALs Study, The Berkeley Girls with ADHD Longitudinal Study, we've just completed a 25-year follow-up and we have reams of data on similarities and differences for girls versus boys with ADHD.
And girls with ADHD share a lot of features with boys, but are particularly likely over time to develop what we call pretty severe internalizing depression and anxiety symptoms. The rates of attempted suicide, the rates of non suicidal self-injury in a society have been shocking in our data, and it's really important to get the message out that ADHD can and does exist in girls.
It takes some, sometimes real digging to find out. And when it exists, the problems can be subtle sometimes, it can be blatant, other times, but longer term into adolescence and adulthood, girls are likely to traverse a particular course or trajectory that can be quite devastating unless a lot of work is done.
(4:26) Combined-type ADHD and negative outcomes
Rae: When Dr. Hinshaw says devastating, he means it. But to understand why the research showed such severe outcomes, you have to understand a little bit more about ADHD. There are three types. First is the type you're probably most familiar with ADHD H, the hyperactive, impulsive type. People who have this move around a lot, may fidget, have a hard time sitting still, and they're impulsive, meaning they act before they think, which can have pretty serious consequences.
Then there's the inattentive type, like me. We have problems paying attention, staying organized, keeping ourselves on track. And then there's what's known as combined type, which you guessed it, is both the whole menu: hyperactivity, impulsivity, and inattention. And it's important to understand these types in no small part because one of the most interesting findings in The BGALs Study was that girls with the combined type of ADHD had the highest rate of negative outcomes.
Negative outcomes. It's kind of a bland scientific phrase, but when you pull it back, what you find is that by the end of their teen years, the girls in the study who had the combined type of ADHD were over two and a half times more likely to have self-harmed or attempted suicide. Why was this? What was going on and why was this one type of ADHD so much more impactful than the others? I wanted to know, and Steve had some good answers.
Stephen: Girls on average with the diagnosis are more likely than boys to have this exclusively inattentive. Don't organize yourself too well. Consistently inconsistent, time management is a problem, maybe being more hyperverbal than hyperactive. And so in The The BGALs Study, we had girls with ADHD who ranged the spectrum, if you will, of both of these underlying dimensions.
The girls, with the more purely inattentive forms of ADHD, not as noticeable, suffering in silence, nobody thinks they really have ADHD often until the teen years or much later. Academically, in terms of neuropsychological testing, in terms of family interactions, they frankly had just as many problems, although more subtle than girls with what we call this combined hyperactive, impulsive, and inattentive.
In the realm of cutting yourself, burning yourself, mutilating yourself, and frank suicide attempts or completed suicide, the overall tendency is that girls who have more serious impulsivity, along with more serious inattention, are more likely. However, in our latest data analysis, when we don't put the girls into types, we just look at the dimensions, inattention is a contributor to NSSI and suicidality as well.
Rae: When I was reading about this, something that struck me — I have inattentive ADHD. I'm very un hyperactive — but I know that for a lot of us who have inattentive ADHD and I know you've written about this, there's an enormous amount of shame, of sort of low self-esteem that we've struggled with. We often have poor self-concept. I spend a lot of time wondering if I was just stupid or sort of not as good as other people. And it can eat away at you.
And then when I read about this sort of NSSI and suicide attempts, what made sense to me about the combined type thing is you have sort of all of the getting missed, not being diagnosed, you know, the inattentive side, and all of the things that come with that and all of the impulsivity and maybe not thinking before you act of the hyperactive, impulsive side.
Stephen: It's a double whammy.
Rae: Yeah.
Stephen: I'll often say speaking to parents' groups or teacher groups if you're a boy or a girl, but let's focus on girls for now with ADHD, and you've got a lot of that impulsivity as well as the inattention and disorganization, you're the one likely, as the birthday cake comes into the room and the kids are singing and the candles are flaming to blow out the candles before you remembered that it was your friend's birthday party, not yours. And I've seen that happen in real life.
And so, the peers think, "What's the matter with you? You don't even respect your friend. You don't remember whose birthday it is." This impulsive tendency to act without fully realizing or thinking ahead of the consequences leads to a lot of problems with peers who don't think you care about them. The inattention also leads to not picking up facial cues, nonverbal signals. Very well. And let's face it, you're a girl. You're supposed to do well in school. You're supposed to be pretty compliant.
(9:18) Self-esteem, ADHD, and girlhood
In the book I wrote in 2009 called "The Triple Bind: Saving Our Teenage Girls from Today's Pressures," aside from ADHD but magnified by ADHD, is this impossible terrain of having to be the nurturer, having to be super competitive under Title nine, athletically and academically, and having to do so effortlessly. Oh, and you better look pretty sexualized as you do it.
It's a recipe for girls' self-esteem as puberty hits to plummet. And the book is 15 years old, but the predictions about the general societal trend for girls in particular have increased suicide rates, massively increased rates of depression and anxiety.
Now imagine that you're a girl who never quite understood that you've had another developmental challenge, which is organizational problems, difficulty with executive functions, planning, and remembering strings of information. And it must be my fault because I'm just not...the way other girls want me to be or my family wants me to be. It's a very toxic combination.
Rae: Absolutely.
Stephen: Where sometimes it's hard to tease apart then what's depression and anxiety and what's underlying ADHD. And for way too long clinicians have thought, "Well, it must be depression and anxiety that goes along with being female. ADHD is a guy thing."
Rae: Yeah, it feels like the similarity in the symptoms meant a lot of us got shut out of the thing that was causing them in the first place.
Stephen: Yeah.
Rae: Actually, I want to ask you about the triple bind, because it really helped calcify for me this understanding that ADHD is a feminist issue, that being under-diagnosed, being unseen, really works so perfectly in concert with some of the really unrealistic standards for women in general that we face on so many fronts.
Stephen: That's right.
Rae: It is something that I keep coming back to because it seems like it's kind of left out of the conversation a lot of the time that ADHD for women and girls is something that compounds the pressures that all women, all girls face, but it becomes impossible.
Stephen: And puts under a floodlight, so to speak, the supposed lack of empathy or lack of communications. I mean again, girls are supposed to be kind of perfect in all ways, and nobody's perfect in all ways. But underlying and under-recognized ADHD symptoms now presents another mystery, "Why am I not doing as well as my family or my peer group or my teachers want?"
And just to go back for a moment, a couple of colleagues at U.C. Berkeley have published over the years papers about males and females of many species, even at basic animal research. About 30% of basic animal physiology — we're not talking about humans. We're not talking about ADHD — is males of the species only about 6% is females only. And then the remaining 67% has both. But the researchers often don't bother to analyze for sex differences.
Then 30 years ago, the National Institutes of Health said, "If you want to get money to study things like MI, myocardial infarctions heart attacks, it's thought of as a male disease. But women are dying every day from heart attacks and we don't have enough research." So, from basic research on animal physiology, females are the outliers. They have this thing called estrus. They have hormonal cycles. They're atypical.
Same thing in human research and now in neurodevelopmental research and clinical practice, the recognition is boys still are more likely than girls to have ADHD, especially when there's a lot of hyperactivity and impulsivity involved. Being a young boy comes with a slower developing brain over the first ten years of life. It's little wonder that boys are more prone to autism, ADHD, some forms of learning disorder, Tourette's, etc.
But the field has, the clinical and research fields have said, "Well, it just can't really exist in girls. And it's a self-fulfilling prophecy." And the very rating scales that I used to have to submit for grants and papers were heavily biased towards fidgeting and running around the classroom rather than the more subtle but real executive, time management, organizational skills problems that really make life difficult the older you get.
Rae: The externalized versus the internalized piece.
Stephen: That's exactly right.
Rae: So, that actually brings me to something that is sort of like a bone that I pick often, which is research is what moves treatment care forward. It moves the academic and I think the treatment conversation forward. When you came out with The BGALs Study, how did the scientific community, the academic community, the clinical community respond?
Stephen: I think in some ways not that anyone could have planned this ahead, The BGALs Study and the research we were doing and publishing with each wave of follow up, was in some ways on top of the crest if you're surfing of a wave that was starting to break. And other much smaller studies or theoretical reviews said, "Maybe we have been neglecting ADHD in girls and women."
And because, of course, it wasn't only that it was a boy thing until about 30-some years ago, everybody knew that ADHD stopped the day you hit puberty because you stopped running around as much. So, it's not just a girl thing. It's a woman thing. With the requirement that you talk about verbal behavior, not just physical behavior. You look for more subtle signs. Many girls cope at the cost of anxiety and exhaustion and not sleeping as self-esteem plummets.
And it takes a really good history to, because you're supposed to, in the DSM, have these impairing symptoms before year 12, which is true for most boys, especially with the combined form of the condition. But for girls it may take middle school, high school, post-secondary relationships, jobs. And finally, the stress is too much, the organizational demands are too much or the work is two road and the dam burst and you go back in time to document.
This didn't appear magically when you're 25 or 30 5 or 55. This has been building for a long time. And finally, with greater recognition on the part of researchers and clinicians, it can be a kind of mystery solved. And adult treatments for ADHD. We don't have a cure for autism or ADHD or learning problems, but we sure can promote recovery with often a combination of medications and behavioral and cognitive, behavioral, and organizational strategies.
(16:20) ADHD as a "trend"
Rae: This wave Steve talks about, the surge of women getting diagnosed with ADHD that began during the pandemic has some big upsides. For example, it led to people like my friend Katherine Martinelli, who you heard from a couple of episodes ago, finally getting the help they needed. But when the way your brain works becomes part of a trend, what does that mean in the long run?
Stephen: So, part of it, obviously, the pandemic, which isolated everyone and made these sort of symptoms come alive. The well-known TikTok phenomenon, where the good side is, here's a support community. I may have had this thing called ADHD for a long time, didn't recognize it and realize it.
The downside being on some less scrupulous sites, here's your 4 or 5-item screener. Yes, Yes. Yes. And now here's a link for getting mail-ordered stimulant medications to my home without any medical or psychological diagnosis.
So, the world works in these kind of ways. Ignore, deny, and then the wave crests. And yes, this is a real issue and it's a really important one. Not only is the risk for nonsuicidal self-injury and attempted suicide really high, but nearly half of our girls with ADHD in The Big Gal Study had had an unplanned pregnancy or one or more by their mid-twenties, compared to about 10% of our neurotypical comparisons.
Three times to three and a half times more likely to have experienced dating violence or intimate partner violence. These consequences add up and getting a valid diagnosis from a clinician who really knows something about ADHD in kids and teens and adults. And you can go back I mean, often it's like kind of the rings of a tree. You got decent grades. You didn't flunk out of grade school or middle school. Teacher comments "If only she tried harder. Doesn't seem organized. So careless."
And if you put two and two together despite all that coping and you hit that point in life after high school, in many instances, and boy, the missing pieces of the puzzle are now fitting into place. And we should really consider ADHD as a partial explanatory factor for this depression and anxiety and low self-esteem and often very chaotic lives.
Rae: Yeah, I remember feeling so relieved when I was diagnosed.
Stephen: Yeah.
Rae: Because suddenly there was a name for all of those things. I understood the source, which meant I could find a way to grow and change and also to sort of re-format my conception of myself. And I know a lot of women with ADHD who, when they get the diagnosis, when they had the label, you know, some people are afraid to put a label, but for a lot of us, it's really freeing. That's right. To be able to say, "Ah, it's not me, it's my ADHD, which means I can work with that."
Stephen: That's right. Something to cope with, something to work through and around and recover from. Maybe not be cured of because...
Rae: Exactly.
Stephen: ADHD, as I said a little bit ago, is the extreme of traits that we all have. And if you get extreme on those traits, there's a likelihood that genes are involved. ADHD is largely the result of genetic differences between people, not child-rearing or environmental differences. Now, extreme neglect is an exception to that. Being born at a very low birth weight can predict ADHD and other neurodevelopmental disorders.
So, you're suffering in silence. You don't quite get it. You're self-blaming, stigma, and what we call internalized or self-stigma comes into play, "I'm doing something wrong. It makes me depressed to think that I'm not up to par with the other gals I know. etc, etc.. None of my relationships aren't going the way I want. Work isn't going away. I want to change jobs. And the new boss is sort of the same as the old boss saying I'm not organized."
The stigmatization and discrimination just add fuel to the fire of lowering self-esteem and feeling more helpless.
(20:40) What to do about ADHD stigma
Rae: Yeah, and without information or treatment, that can really be enough to take you down. Because the thing is, there's been a lot of progress, but the stigma around ADHD is still very much there and very much heavier if you're a woman. And what it looks like is that we're less likely to get the help and support that we need. Even now that we're still standing up for ourselves and saying, "Hey, I need help, my brain works differently" and people are saying, "Couldn't you just try harder?" It's the kind of thing that isn't simple and doesn't have a quick or easy solve.
But I figured if anyone had insight in what we should do next or what's coming down the line, it would be Steve. This may be too big a question to ask, but I feel like if there is anybody to ask, you're the guy. How do we fix this? These problems feel intractable.
I feel like as long as I've been aware of ADHD, I've also been aware of this constellation of stigmatizing issues that come with it. Overprescription is a problem.
Stephen: Yes.
Rae: The medication is what you need, the stigma that you feel internally, and the feedback that you get externally, that kind of confirms these things. How do we change this?
Stephen: So, I'm very concerned and sort of by other parts of my professional life with overcoming stigma and discrimination more generally. I grew up in the Midwest, kind of an idyllic household. Mom and Dad taught at Ohio State. My dad would be vanished into thin air for months or, at one point, a year at a time. The doctor had told him and my mother never to talk about what they thought was schizophrenia. It was bipolar disorder. And I really diagnosed him correctly when I left college and went on to a career in psychology.
So, I've spent a lot of my adult life trying to educate people about how serious severe mental illness is, even though it gets trivialized and stigmatized and ridiculed in the media. And for ADHD, which isn't typically as serious. You don't have psychotic symptoms with ADHD the way you can with severe mania or depression. And because of its subtlety and because of that consistent inconsistency, the world thinks you're just not friggin trying hard enough.
So how do we solve this? Knowledge is good. It's knowledge in context. It's knowledge and contact. The more people, you know, with major depression, with bipolar disorder, with PTSD, with learning disorders, with attention deficit disorders, with autism spectrum disorders, you realize they're human like everybody, and they've got their strengths and weaknesses. And for all of these conditions with treatment, they can be hidden strengths.
I'm not of the opinion that every person with a mental or neurodevelopmental disorder is a hidden genius waiting to be discovered. People straddle intelligence levels and creativity, whether or not you have these conditions. But with treatment, having a, quote, hyperactive, inattentive mind can lead you to see things that most people don't. Having a learning disability. Actually, we know from research now, increases your empathy and increases a lot of spatial abilities.
Maybe because of other regions of the brain are compensating. So, knowledge is good. Contact is really good. And enforcement of things like the Americans with Disabilities Act, it's illegal to discriminate against people with physical or mental disabilities in the United States, in public or in the workplace. It's been on the books for 34 years now. But many people don't want to invoke it because they'll be outed.
Rae: Yeah.
Stephen: Because they'd admit that they have one of these conditions. So, it's going to take I mean, how do we solve climate change? I'm not prepared to answer, but it's going to take everything from carbon taxing to recycling and a million things in between. Eradicating stigma and enhancing acceptance is, media has got to change. Policies have to be enforced. Parity for mental health coverage and sticking up for people when somebody makes a joke about that crazy person or how bipolar that was or how hyper that was.
Rae: Or I'm so ADD.
Stephen: Or ADD, is that with the lexicon? So, it's a multifaceted problem and it's going to take a lot of work and a lot of levels of society. But knowledge and contact are, I think, the two big ones. And getting treatment.
Rae: That is an admirably complicated answer to a very complex problem.
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.
