Ep 70 - A Deep Dive into ADHD Research: Featuring Hyperfocus with Rae Jacobson

This week’s plans derailed in a very on‑brand way. Mostly because I’m knee‑deep in getting everything ready for Neurospicy 2026 on March 19th, so I’m handing the mic to another podcast whose episode on long‑term ADHD research genuinely deserves your ears. 

I'm sharing an episode of the Hyperfocus podcast with Rae Jacobson, which features in-depth conversations challenging conventional views on neurodivergence. On each episode, Rae discusses key questions and headlines with experts, scientists, doctors, and researchers, exploring both the barriers and the beauty of neurodivergence.

You can find all episodes of Hyperfocus here.

Call to Action: Help support the podcast via Patreon. 

Please come join us on our socials where we are very much present.
 We very much want you to share your stories and opinions. Join our public and private pages to start the discussion.
Public Facebook page at https://www.facebook.com/latetothepartypodcast
Private Facebook group at https://www.facebook.com/groups/1168470233702726
Email us at latetothepartyasd@gmail.com
Instagram page - https://www.instagram.com/latetothepartyasd/
Website at https://latetotheparty.buzzsprout.com

Transcript

SPEAKER_00 0:08

Okay, prepare thyself, Party Poopers. I'm mixing things up on this episode. I realise that for many neurodivergent folks, mixing things up is akin to me like, I don't know, jumping out from behind a bush and yelling, boo! But don't worry, this is more like me appearing in the distance and waving, giving you plenty of time to compose some small talk. So, what I'm doing today is sharing an episode of a different podcast. One that I listened to myself. Now it's called Hyper Focus with Ray Jacobson. It's a show that's it's like-minded features a combination of in-depth fact-focused conversations with experts and more personal conversations with like-minded people. Now, the focus on this podcast is on ADHD and all its variations. Now, personally, I just started in reverse listening to it and then working my way back. I know it's a good fit, and for me, it's helping me understand more about my ADHD, which is frankly largely unexplored for me. So, this episode, I'm I'm sharing a conversation that Ray had uh around a study called the Berkeley Girls Study. Um you may have heard of it, I'm not sure. A lot of people just call it B-Gals Study. Uh it's a long-lasting project that's been watching 140 girls who were diagnosed with ADHD in the late 90s. Now, I'm surprised they could find that many back then in the 90s. And obviously they included a group of girls without ADHD as well. This study reminds me of the UP series, you know, one that they filmed in Britain. Well, they're still filming it. So similar to that on this study, they follow how these girls grow up, uh, how they feel mentally, how their lives progress over the years. It's shown that having ADHD can lead to bigger challenges later on. Uh problems in school, mental health issues, feelings of self-harm, that kind of thing. The study also helps identify what things might help girls and women who with ADHD to do better in life as they grow up. So Ray speaks with expert Dr. Stephen Henshaw about the findings and notes similarities in her own life. Now, a quick trigger warning, please, that there is some broad reference to suicide and self-harm. So please be mindful of this as you listen. Okay. Um, I found this episode like really helpful when I'm thinking about my daughter Eloise and her challenges. She's moving into adulthood. Uh it's a really great discussion. Uh, I will speak briefly after their talk, um, but let's get on with it. Without further ado, the episode's called The Devastated Findings of a Decades-long ADHD stud shared by Hyper Focus with Ray Jacobson.

SPEAKER_02 3:01

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 Big Al Study. In the study, researchers closely studied 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 boy's disorder. Girls barely even made the conversation. But the B-Gal 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 B-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 Henshaw, 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 Hyper Focus, and I'm Ray Jacobson. Here's my interview with Dr. Stephen Hinshaw.

SPEAKER_01 5:21

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 chiefly 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-90s. It took two tries, and the second try, they said, Wow, why don't you go ahead and run these summer camps for grade school-aged girls with ADHD? We can't give you 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 B-Gals study, the Berkeley girls with ADHD, longitudinal study, uh, we've just completed uh a 25-year follow-up, and we have reams of data on similarities and differences for girls versus boys with ADHD. And uh 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, NSSI have been shocking in our data. And uh, it's really important to get the message out that ADHD Canada's exist in girls. It takes some sometimes real digging to find out. And when it exists, the problems can be subtle sometimes, they can be blatant other times, but longer term into adolescence and adulthood, girls are likely to traverse a particular course or trajectory uh that can be quite devastating unless a lot of work is done.

SPEAKER_02 7:26

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, might 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 Big Al 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.

SPEAKER_01 8:57

Girls, on average, with the diagnosis are more likely in boys to have this exclusively inattentive. Uh don't organize yourself too well, consistently inconsistent, time management's a problem, uh, maybe being more hyper-verbal than hyperactive. And so in the BGAL 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 analyses, 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.

SPEAKER_02 10:24

When I was reading about this, something that struck me, I have an attentive ADHD. I'm very unhyperactive. But I know that for a lot of us who have an attentive 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. Like I spent 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.

SPEAKER_01 11:13

It's uh a double whammy.

SPEAKER_02 11:15

Yeah.

SPEAKER_01 11:16

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 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 IX 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 to 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. Absolutely. 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.

SPEAKER_02 13:42

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. Yep. Actually, I want to ask you about the triple mind because it really helped calcify for me this understanding that ADHD is a feminist issue, that being underdiagnosed, 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. And that's right. 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.

SPEAKER_01 14:29

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 UC Berkeley have published over the years papers about males and females of many species, even in basic animal research. About 30% of basic animal physiology, we're not talking about humans, we're not talking about ADHD, is uh males of the species only, about 6% is females only. And then the remaining 60-some percent has both what 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 MIs, myocardial impartions, 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 10 years of life. It's little wonder that boys are more prone to autism, ADHD, some forms of learning disorder, Tourette's, et cetera. But the field has that 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.

SPEAKER_02 16:50

The externalized versus the internalized piece.

SPEAKER_01 16:53

That's exactly right.

SPEAKER_02 16:54

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, what moves the academic and I think the treatment conversation forward. When you came out with the B-Gall study, how did the scientific community, the academic community, the clinical community respond?

SPEAKER_01 17:18

I think in some ways, not that anyone could have planned this ahead, the B-Gall 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 gal 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 you're 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 too rote and the damn bursts, and you go back in time to document this didn't appear magically when you're 25 or 35 or 55. This has been building for a long time. And finally, with greater recognition on the part of researchers and clinicians, uh, 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.

SPEAKER_02 19:30

For example, it led to people like my friend Katherine Martinelli, who you heard from a couple 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?

SPEAKER_01 19:43

So part of it, obviously, the the pandemic, which isolated everyone and made these sort of symptoms come alive. Um, 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 four or five 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 the world works in these kinds 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 non-suicidal self-injury and attempted suicide really high, but nearly half of our girls with ADHD in the Big L study had had an unplanned pregnancy, or one or more by their mid-20s, 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, um, and you hit that point in life after high school, in many instances, boy, the 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.

SPEAKER_02 21:53

Yeah. I I remember feeling so relieved when I was diagnosed. Yeah. 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 reformat 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 to be able to say, ah, it's not me. It's my ADHD, which means I can work with that.

SPEAKER_01 22:26

That's right. Something to cope with, something to work through and around and recover from, maybe not be cured of. Because 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, um, 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, et cetera, et cetera. Not my relationships aren't going away. I want work isn't going away, I want, I 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.

SPEAKER_02 23:40

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. Over prescription is a problem, 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?

SPEAKER_01 24:54

So I'm very concerned in sort of my 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 banished 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 them 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 uh 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 brains 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.

SPEAKER_02 27:24

Yeah.

SPEAKER_01 27:24

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 a media's 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. Yeah. Or how bipolar that was, or how hyper that was. Or I'm so ADD. Or ADD is now in the lexicon. So it's a multifaceted problem, and it's going to take a lot of work at a lot of levels of society. But knowledge and contact are, I think, the two big ones. And getting treatment.

SPEAKER_02 28:16

HyperFocus is made by me, Ray Jacobson, and Cody Nelson. Our music comes from Blue Dot Sessions. Our research correspondent is Dr. KJ Wynne. Calvin Keney is our video producer, and video is edited by Alyssa Shea. Brianna Berry is our production director, and Neil Drumming is our editorial director. Production support is provided by Andrew Rector. If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to hyperfocus at understood.org. This show is brought to you by understood.org. Our executive directors are Laura Key, Scott Koshir, and Jordan Davidson. Understood is a nonprofit 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 slash gif.

SPEAKER_00 29:14

Okay, it's Dan Beck. It was good, wasn't it? Uh I what I appreciated was that the that there was a positive conclusion and uh talking about eradicating stigma, which is well, it's a complex cultural change. It's slow going, but I think it's building. But for me, it also made me think about uh what it's like growing up comparing yourself to others and feel like you're not doing enough or you know you could do better. I I when I when I hear stories like this, it just makes me feel better for myself and a bit more forgiving. It's it's sad and all too common that studies like this they've they've traditionally neglected girls and women with ADHD. So this has been really uh nice to listen to and it's probably worth going and having a look at the study yourself to see what other findings have come out from it. So that was an episode of Hyper Focus with Ray Jacobson. Now, if you want to listen more, you just search for Hyper Focus with Ray Jacobson and podcast the episode all the usual places. So that's Hyper Focus with Ray Jacobson. Ray is R-A-A. I really enjoyed sharing that, and I look forward to seeing you on the next episode where I'm going to be talking to science writer Sadie Dingfelder. And it's also gonna be after my live event called Near A Spicy 2026. I'll talk a little bit about that, and hopefully this time I'll get to share the whole thing. Let's see how it goes. So until next time, be kind to yourself.