Diagnosis Can Miss ADHD Symptoms In Girls

The majority of attention deficit hyperactivity disorder (ADHD) research has focused on boys. But recent research shows that many girls who have ADHD simply aren't diagnosed — ADHD manifests itself in girls as detachment and distraction rather than in the disruptive behavior often seen in boys.

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ALISON STEWART, host:

This is Talk of the Nation. I'm Alison Stewart in Washington. Neal Conan is away. Think about a kid with ADHD, attention deficit hyperactivity disorder. And, you might imagine a young boy disrupting his classroom, out of control, impulsive. Until, recently the majority of ADHD research has concentrated on those boys. But, even though young men do struggle with ADHD look beyond them and you'll see girls who are fighting the disorder. Only, they tend to be staring out a window - distracted and disconnected. These girls often are under-diagnosed and at a higher risk for depression, substance abuse, eating disorders and trouble with their peers.

One person who has been on the case is Stephen Hinshaw, chair of the department of psychology at the University of California, Berkeley. For years, he has been a following a large group of girls, now young women, who have this disorder. He will join us in a moment. But, first I want to talk to Jen in Kansas City, Missouri, who found out she has ADHD. Hi, Jen.

JEN (Caller): Hi, there.

STEWART: Hi. So tell me a little bit about how and when you found out.

JEN: I'm 31, and I just found out in May that I had ADHD. For my whole life, I remember having anxiety attacks when I was nine and being unable to sleep at night, and started a master in social work program. And, in the spring of this year - heard presentation on ADHD and what the symptoms are - how the symptoms are different in girls and boys. And I was like oh, that's my life.

STEWART: A light bulb just went off. What kind of symptoms? What did you experience that you never connected with ADHD?

JEN: Well, for one, constant day dreaming, and I thought that ADHD would have me more jumping off the rafters and stuff. I was a teacher for awhile, and I saw that in boys all the time and girls, but I didn't know that some of these other symptoms like just being a space cadet were symptoms of ADHD. Inability to sleep at night was a big thing for me; high, high, high amounts of stress; being in a crowd and being unable to focus on the conversation tracking a whole crowd of conversation. I always prefer to be in small groups.

STEWART: Did you ever experience depression? I know some girls experience depression or seem symptomatic of depression.

JEN: Actually, yeah, yeah. I had my first bout of depression when I was about 16 and then subsequent to that, had two very severe postpartum depressions. And, I guess like that's something that I'm really interested in with your guest is to ask what research is out there on postpartum depression related to ADHD? And should we be screening for ADHD among moms who are experiencing that?

STEWART: It's a great question. I just wrote it down, and I'll make sure I pose it to our guest coming up. Jen, thank you so much for being so candid. We do appreciate it. If you have a story like Jen's, your very own story, if you're a woman or a girl with ADHD or the parent of a girl struggling with it, give us a call. Our number here in Washington is 800-989-8255. The email address is talk@npr.org. You can join the conversation at our Website as well. Go to npr.org and click on Talk of the Nation.

Also, I want to point out that a little bit later on the hour we're going to talk about Joe Lieberman. He'll keep his chairmanship in the Senate, but should Democrats forgive and forget? But right now, we do want to get to Stephen Hinshaw. He is with us from the studios at the graduate school of journalism at the University of California, Berkeley. He is the chair of the psychology department there and a leading researcher in (unintelligible) and ADHD. Welcome to the program, Stephen.

Dr. STEPHEN HINSHAW (Chair, Department of Psychology, University of California, Berkeley): It's great to be on. Good afternoon.

STEWART: Good afternoon. So, can you describe a typical story that you might see with a girl with ADHD.

Dr. HINSHAW: Well, the typical story is that - well, there's been problems for a long time brewing, but of course it can't be ADHD. Only boys get that condition. Now for some girls, the behaviors look pretty similar to the stereotypic boy. There's out-of-seat behavior and fidgeting. But, often in girls there isn't that overt behavior. There's a kind of spaciness we just heard about, inability to focus, doesn't seem to hear or listen to things, real problems organizing and the typical girl like this suffers in silence for all too many years. No one's quite sure what it is. Is it just that she is not motivated or lazy or not bright, or is there a learning disability? Middle school hits now and some ways all hell breaks loose because there's multiple teachers a day, many more things to organize or get disorganized. Now, that we know that ADHD can and does exist in girls, there is more of a call to let's make the diagnosis - if it's done carefully when appropriate and see if we can give some treatment.

STEWART: Is it because the ADHD presents itself differently in girls than in boys? Is that why so many go undiagnosed on many girls?

Dr. HINSHAW: Well, the first fact is that all of the disorders of childhood that are behavioral or emotional or psychiatric appear more in boys. This is true of autism or autistic disorder, conduct problems, many forms of learning disorder, ADHD. Boys are more vulnerable. The conditions that really start to rear their head in adolescence - anxiety, depression, eating disorders - that's when girls really take over in prevalence. So, it is true that girls are less likely than boys to have ADHD. But, what's even more true is that even when they have it, it's likely to get missed. It's likely to be thought of by teachers, parents, clinicians as, well, it's got to be something else. It's not ADHD.

And as I mentioned a second ago, girls are more likely than boys to have what we call the inattentive form or type of ADHD where there's not this overt fidgeting restless symptoms but the spacey, inattentive, disorganized behaviors that are more subtle to notice. Now, not all girls have that form of ADHD, but they're more likely than boys. So for a couple of reasons, they're much more likely to get undetected.

STEWART: All right, Stephen. I'm going to ask you to listen in to our next caller. Her name is Gail, joining us from Charlotte, North Carolina. And, you are a very interesting person to speak to Gail because you have both a boy and a girl with ADHD?

GAIL (Caller): Correct.

STEWART: All right. Can you compare and contrast their behaviors?

GAIL: Well, I have - my oldest is a boy, and he has pretty serious ADHD - you know, he's got it all. He's got the inattention, he's got inability to sit still, he has a variety of other issues. But it delayed our diagnosis of our girl because we don't have a regular household. We have an ADHD household. Nobody is normal. And, so we noticed that our daughter was performing below her potential, but we couldn't quite figure out what was going on, and I'm wondering if that's sort of this idea that you're caller spoke about of this not being diagnosed.

STEWART: Stephen, what do you think?

Dr. HINSHAW: Well, you've said a couple of important things here. ADHD runs in families. Unlike the stereotype, well, it's just bad parenting, parents who are lax. ADHD's genetic liability is higher than the genetic liability for schizophrenia. It's almost as high as the genetic liability for bipolar disorder or autism. So it runs in families and through biological relatedness.

GAIL: Wow.

Dr. HINSHAW: With that said, many parents of kids with ADHD have it themselves, certainly not all, 30 to 40 percent whether it's been diagnosed or not. And especially if there's a boy who's the stereotype Dennis the Menace all-over-the-place type of ADHD, a girl with more subtle problems in that kind of household. And because we just all know that girls really don't have ADHD - could get missed.

STEWART: And Gail, has your daughter's, has her situation improved?

GAIL: My god. When we moved to Charlotte a couple of years ago, she was testing below grade level. And she just recently had her reading and math comprehension tests. And in math, she scored in the 98th percent tile on the state test last spring. And in reading comprehension, she scored post-high school for vocabulary and reading comprehension.

STEWART: Well, good honor. Gail, that's good news. Thank you so much for calling.

GAIL: One question, I'll take it off the air? What should I expect in the future? I've got a sixth grader and a fourth grader. What kinds of stuff is going to happen in middle and high school?

STEWART: OK, thanks Gail. Doctor, what does happen?

Dr. HINSHAW: Well, we've known for a long time now, 25, 30 years that boys with ADHD, who are 99 percent of those studied, don't just grow out of this condition when they hit puberty. That's what we though 35, 40 years ago. And ,it is true that the most flagrantly hyperactive symptoms do tend to abate in early adolescence. But the impulse control problems, the inattention in boys lead in some cases to delinquent behavior, to substance abuse, early drop out of school, continued academic and vocational problems.

What we don't know very much at all yet is what are the long-term outcomes in girls, because there's only been literally a handful of longitudinal studies past childhood. And, those studies including ours here in Berkeley, some back in the East Coast, a couple in Europe suggest that a girls can and do get ADHD. And be - when they do, in adolescent years as with all girls, there's a risk for anxiety, depression, and eating symptoms. Girls with ADHD even have known of that risk.

STEWART: Why is that?

Dr. HINSHAW: Well, it's something about puberty and it's something about the expectations we have of all of our daughters and nieces where many problems that have been dormant during childhood really erupt and emerge in adolescence especially for girls. And ADHD may just increase the risk for that because these are girls who've been having problems before. But, the short answer is that we have not systematically followed enough girls yet past late adolescence or very early adulthood to know. But, what we do know from the research on boys and girls long term is that there's no one single picture. Some kids with ADHD have real difficulties later on. Others do quite well, their resilient kids. They're the ones who despite the odds, pull it together academically, find a partner, find a good work setting and the goal of us researchers and clinicians is to figure out what we can do early on to push kids into that pipeline rather than the failure experiences to many do have.

STEWART: We're speaking with Steven Hinshaw. He is chair of Psychology Department at the University of California in Berkeley. He's a leading researcher in girls and ADHD. I want to talk to you a little bit about some of the studies you've done, because you're actually followed girls over a long period, these times when his studies we're done during summer camps. So stick around because we do want to get to that. We also encourage you if you're a women or girl with ADHD or the parent of a girl, struggling with the disorder, please give us a call. Our number here in Washington is 1-800-989-8255. Our email address is talk@npr.org I'm Alison Stewart. It is Talk of the Nation from NPR News.

(Soundbite of music)

STEWART: This is Talk of the Nation. I'm Allison Stewart in Washington. And we're talking about the treatment for girls with ADHD. New research suggests that there might be a difference in how the disorder plays out in boys versus girls. If you want more information about ADHD, you'll find links to the National Institute of Mental Health at our blog along with the list of common symptoms that girls struggling with the disorder might face. You can find that at npr.org/blogofthenation.

If you are a woman or a girl with ADHD or the parent of a girl struggling with this, give us a call. The number here in Washington is 1-800-989-8255, and our email address is talk@npr.org. You can join the conversation at our Website, npr.org and click on Talk of the Nation. Vanessa is joining us from Portland, Oregon. Hi, Vanessa.

VANESSA (Caller): Hi. How are you?

STEWART: I am doing well. Tell us your story.

VANESSA: Well, I was diagnosed with ADHD in my late 20s. And, I think one of the things that came to mind that I'd really like to hear - talked about more is the stigmatization of ADHD and with this information and stereotyping there is out there, which I think keeps both boys and girls, but especially girls from being diagnosed with ADHD because it's such a negative stereotype and such negative image people have of ADHD and being - or the image that well we all ADHD. That's the other one I come across a lot, too, that's very discouraging.

STEWART: Vanessa, let me ask you. Of all the symptoms that we've been describing of girls having ADHD, did you have any of those symptoms, and did you think something else was going on with you?

VANESSA: I did have the symptoms - anxiety and depression. You know, the thing that the teacher saying, she's not living up to her potential. I - the doctor - the gentleman, Steven, he brought up that there are some people that seems to kind of plow through it and keep going, and I did manage to get through college. But it was a huge weight lifted off my shoulder with the diagnosis. It was life-changing. And ,I think it's unfortunate that it was into my late 20s to receive the diagnosis that it would've been - I had - I would've lived a much different life if it had been diagnosed in my childhood. But I'm still very grateful that at least I was in my 20s so, because the issue is different in your life once you understand what it is that's going on and it's not just that you don't - you know, you don't know where you placed your keys because there's something wrong with you morally, it's because there's something wrong with you chemically.

STEWART: Vanessa, thank you so much for sharing your story. We appreciate it.

VANESSA: My pleasure and I just hope that there's more commentary on how we can bring a - the realistic approach to what ADHD is and the good sides about it as well as the negative sides about it so that people don't have this misunderstanding and are afraid to be associated with that themselves. I can call someone an alcoholic before I can tell them that I think they have ADHD. It takes more friends to being told they have ADHD. So, I hope you guys address that a bit, too.

STEWART: OK. Thank you very much. Steven Hinshaw is still with us, chairman of U.C. Berkeley Psychology Department. You've been researching girls with ADHD and one of things about the work and great about the work that you've been doing is you've been doing it over a period of time. You started your research at summer camps. Tell us how that worked?

Dr. HINSHAW: Well for many years, I've been researching mainly boys with all sorts of problems, often ADHD in summer camp settings. It's a great way to do research. You're not just in a lab or clinic, you're on the play yard, you're in the classroom, there's art, there's drama. You can observe behavior as it occurs, you can pull kids out for individual tests. Every year, 97 boys would apply for the camp and three girls, what are we going to do with those poor three girls? Bring them in and get outnumbered, and there weren't enough to really develop research until, my team and I had the bright idea back in the mid-80s to ask an IMH for funding to study girls exclusively with ADHD, because hardly anyone had done that before.

So to make a long story short, we got a big sample of girls with ADHD. A control group of their peers from the same neighborhood, same age, same race participating in the summer camps that we conducted so we could really learn a lot about their behavior. And, then as we told the families at the beginning of the programs, if we get our funding, we'll see you in five years and we'll see you in 10 years because we would like to begin a lifetime study of your daughters and we've been able to publish findings and follow the girls up in adolescence five years later and are just completing our 10-year follow up now, and we've learned lots of interesting things.

STEWART: What is the one thing that you learned that you just didn't expect?

Dr. HINSHAW: Well, we learned a whole lot of things. The unexpected thing - we really didn't know until to our follow up. A lot of expect and difficult things we learned early on were girls can and do have ADHD and when they do, there's problems across academics, other disorders they have, peer relationships, services they need. So it was a sad but true finding we found. What really struck us at this adolescent follow-up, we got almost 93 percent of them to come back which is a hard thing to do in California with the mobility, but the girls and family had liked our programs, wanted to come back and help the research.

STEWART: Sure.

Dr. HINSHAW: And we found that girls with ADHD not only persisted with a lot of the problems they had even though they were a lot less hyperactive than they were as kids. But, their problem expanded into other areas like anxiety and depression, the typical female adolescent type problems, like symptoms have eating disorder. As we're doing our 10-year follow up now, serious behavioral and emotional problems, sexual problems, early drop out of school, sadly, this is more the case for the ADHD sample than the comparison sample.

Yet, we see signs everywhere of health and resiliencies girls struggle with the disorder, and this is what Vanessa really brought up with the disorder that's not really recognized or acknowledged in girls. It's stigmatized. Sure, I've got ADHD, too. I can't focus. Well, it's only an American diagnosis. It doesn't exist anywhere else in the world. We're just intolerant of kids who fidget and squirm. And in fact, ADHD exists in every culture where there's compulsory education.

ADHD causes big problems later in later unless we systematically get treatments started and maintained. So, it's one thing to get the diagnosis which takes a lot of careful work and another thing, to accept it and to keep up with treatment despite the odds because, as Vanessa said, who wants to be known as having this disorder when maybe it's a fake disorder in the first place.

STEWART: Our next...

Dr. HINSHAW: It is hard to know who does have ADHD and who doesn't. We have to assess it carefully. But when it exists, there are real problems.

STEWART: Our next caller probably is listening intently to your last answer. Jennifer in Lancaster, South Carolina. You resisted your daughter's diagnosis.

JENNIFER (Caller): Yes. And I've heard so much that resonates with me. I resisted - oh, first of all, thanks for taking my call. I resisted getting a diagnosis for her even though I suspect that she had ADHD mostly for the reasons that we talked about that there is a stigma that it's a bogus problem, that the real problem is discipline. And I resisted this even though I knew from my own experience, you know, how valuable intervention could be because I was diagnosed in my - I guess, I was close to 40 as bipolar.

And you know, even knowing what kind of intervention could help with these problems, I was still resistant. And we finally had her evaluated and diagnosed when she's about seven. My daughter is 10 now. And the medication that was prescribed for her was very helpful, but her teacher still would mention to me that they felt she was - even though she was testing at or above grade level in almost all subjects, she's very bright. They felt that she was missing some things, and that as time went on, she'd have more difficulty. We did end up taking her out of school last year. I'm home schooling her now.

What has been interesting to me in having to educate her myself is I've discovered certain cognitive problems, which maybe Dr. Hinshaw can speak to, that I think are often misinterpreted as behavioral problems, as not paying attention or as being defiant. My daughter has significant trouble with I think what they call sequencing, which is breaking down problems into steps and to evaluate them with steps and to analyze problems. And that single problem has consequences in everything that she learns. I recently realized that she wasn't being defiant in not cleaning up her room. Well, she was but - that she didn't know how to hang up clothes on a hanger. And, I had sit down with her and walk her through the steps, and now it's wonderful. I mean, in 10 minutes, she grasped something that apparently she had never has before.

And I wonder if Dr. Hinshaw could speak to that, to this cognitive problems that are - that are not really addressed. That are often addressed as behavioral problem. But I also just wanted to say, her diagnosis led to me being diagnosed in, this ADD. And now, I'm receiving treatment for that, and that has been a huge difference for me as well. And it - ADHD is difficult to treat in combination with bipolar, because the ADD medications often were trigger mania. But I have been, you know, very grateful to receive the treatment for that, and then I'm doing very well and my daughter is doing very well also, but I'll take my answers off the air.

STEWART: Sure. Good luck to your family.

JENNIFER: Thank you.

STEWART: Stephen, any thoughts on what she had to say - Jennifer had to say.

Dr. HINSHAW: A lot of thoughts about what this caller I had to say it's really fascinating and so, just to go in sequence, because sequencing was one of the problems that was mentioned.

STEWART: Yeah. That's a very interesting point she was making.

Dr. HINSHAW: Right. ADHD is a behavioral low-tech diagnosis. All of the brain scans and computer test in the world don't tell us what parents and teachers and clinical observers tell us that, beyond what the problems of kids that age have way beyond, there's a sub group who really do have difficulties with attention and impulse control and activity level. Underlying many of those kids' problems are sometimes subtle and hard to see cognitive or what we call neuropsychological or Executive Functioning Deficits, planning, correcting errors, sequencing. Not all kids with ADHD have such neuropsychological problems, but at least half do. ADHD as I'm sure we'll discover in the next decade or two, isn't just one thing. It's probably three, or four, five different syndromes that all look alike.

These problems at a cognitive level can be addressed at the same time that we provide rewards and more structure. Is it that my kid is just being defiant and I've got to up that ante and be more consistent? Or, is it in part a skill deficit - in this caller's case, not being able to do the steps of hanging up clothes. And taking both a skill deficit you - let see what we can teach. May be there are some skills and tasks that my child, my student can't do well, and a structured behavioral approach. Those are very helpful strategies. They can be as helpful as medication in many cases. And for most kids with ADHD boys and girls, we find the maximum benefit when we combine the best of medication practices with the best of these behavioral family and school interventions.

STEWART: I want to take off my host and journalist hat for a moment and put on my concerned citizen hat. And when we were researching the story and talking about the story, I found myself just a little bit angry that there wasn't more research about girls, and that all these young women and girls out there struggling with this problem, and there hasn't been a whole lot of attention paid to it. What's going to change that?

Dr. HINSHAW: Well, I think this is the problem that has been noticed way beyond ADHD before, sometime now, may be not long enough. Back in the early 90s, as I got research grants from the National Institutes of Health, and press releases were put out and alerts to investigators. If you're studying heart disease, you've got to include females in your samples as well as males. Females get afflicted by cardiovascular illness. But most of the researchers are men, so we do have a sex or gender bias in a lot of areas of research.

Now, as I mentioned, that the outset for the problems behavioral and emotional problems of childhood, boys are more at risk than girls maybe three to one for ADHD, maybe four to one for autism, but the research was being done at 10 to one, or 20 to one, or 50 to one. We need to raise our consciousness. We need to realize that many of these conditions, both biomedical and psychiatric, are pretty much equal opportunity across races and ethnic groups, across the sexes. And we need to have researchers inclinations and the citizen re-realize and demand that attention is paid clinically and it terms of basic research so that we don't neglect a group who really in need of treatment because of our stereotype and our stigma, well, it can't really exist in this population like girls.

STEWART: We're speaking with Stephen Hinshaw, chairman of the UC-Berkeley Psychology Department about girls and ADHD. This is Talk of the Nation from NPR News. You're listening to Talk of the Nation from NPR News. I'm Alison Stewart joined by Stephen Hinshaw, chairman of the UC-Berkeley Psychology Department. We're talking about girls and ADHD. I do want to one more caller if we could. Let's talk to Liz in Portland, Oregon. How old are you Liz?

LIZ (Caller): Hello. I'm 20.

STEWART: OK. And you have ADHD?

LIZ: ADHD, high functioning autism, known as Asperger's. And I think I may have some anemia and sub-clinical OCD even. I can't afford a doctor right now.

STEWART: So, when did you first realize you had ADHD? Or, did somebody tell - when somebody told you, you had ADHD?

LIZ: When I was told it was just kind of horrible for me, because I was very confused. And I felt like I had done something wrong. I was pulled out of class, and I had to talk to a lot of strange people and do a lot - I thought of stupid things and just writing down, drawing pictures and whatnot and afterward I felt, like I was being punished and talked down to.

STEWART: How has your life changed since you have been diagnosed?

LIZ: Well, with ADHD, I just got a lot of shunned I guess. People, wouldn't to give me as much attention, or didn't think I was worth much. When I diagnosed with Asperger Syndrome, they told me I'd never really leave my mom's house. I'd never really accomplish anything, because I was just special in my own way. Since then I just became kind of, I guess enraged. I had the attitude like oh, I'll show them. Now, I'm 20 years old. I pay for my own apartment. I'm the senior employee at the business I work at, and life is OK. But I'm always really depressed.

STEWART: Well, we wish you all the best and of all good things for you. Liz in Portland, thanks for calling. Stephen, we just have a little bit of time left. One of the things that's sort of interesting or intriguing about this is that many girls with ADHD find ways to cope and perhaps, that's one of the reasons it goes undiagnosed. They figure how to finish that report the last minute. Can you give people one or two, or three things to look out for if they're listening to this program, they're thinking, I wonder is my daughter, my granddaughter has this?

Mr. HINSHAW: Well, the first thing I would say is, has the problem been persistent for some time? Is it causing difficulties at school and at home? If so, go to - you may need to go to websites or talk to self-help groups in your area. Find a clinician in your area who's an expert in this condition. There are still many clinicians out there who think stereotypically ADHD really can't exist. Number two, don't believe a diagnosis that's made in 10 minutes in a pediatrician's office or in a social work office or a psychiatrist's office. It's going to take days and weeks to get information to know that this really is a condition worthy of treatment. And third, stay with treatments. It may take several different tries of medication, it may take a really consistent behavioral program and treatment for the learning and cognitive problems before you really know you've gotten some place.

STEWART: Stephen Hinshaw, you've given us great information today, chairman of the Psychology Department at UC-Berkeley (unintelligible). Thank you so much.

Dr. HINSHAW: Thanks so much, too.

STEWART: I'm Alison Stewart. This is Talk of the Nation from NPR News.

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