A Focus On Adults: Living With Chronic ADHD

With rates of childhood attention deficit hyperactivity disorder at alarming highs, a study confirms that, for many, the condition persists into adulthood. A study by the Boston Children's Hospital and the Mayo Clinic finds that the chronic form of ADHD can lead to depression and substance abuse.

NEAL CONAN, HOST:

This is TALK OF THE NATION. I'm Neal Conan in Washington. With alarming rates of childhood ADHD already in the headlines, a new study confirms that for many, this condition persists into adulthood, and that this chronic form of the disorder can come along with troubling consequences, which can include depression and substance abuse.

And while some worry about over-diagnosis of ADHD in children, the concern about adults is the opposite. A vast majority never get diagnosed or treated. If this is your story, tell us: What don't we know about living with adult ADHD? Our phone number is 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Later in the program, the often overlooked school shootings at Oakland's Oikos University, a year ago today. But first adult ADHD, and we begin with Terry Matlen, who was diagnosed with ADHD in her mid-40s. She's since written "Survival Tips for Women With ADHD" and founded ADDConsults.com. She joins us by phone from her home in Detroit. Nice to have you with us today.

TERRY MATLEN: Thanks, Neal, it's so good to be here.

CONAN: And I wonder, when you were diagnosed, did you suddenly look at your life with new eyes?

MATLEN: I absolutely did. You know, when you have ADHD, that usually means you're born with it. So it's a lifelong disorder, if you may. And it really explained a lot of the challenges that I faced growing up. And finally when I got that diagnosis in my early 40s, everything became crystal clear, and my entire life changed and for the better.

CONAN: And for the better. So what things, for example, were you able to immediately deal with?

MATLEN: Well, I lived for many years of, you know, feeling low self-esteem, wondering what was wrong with me, why couldn't I do what other women could do; like taking care of their children easily, like putting meals on the table, keeping up with the laundry, paying bills on time. All those kinds of things just eluded me, especially, you know, in adulthood.

And I never knew why. I thought I was just lazy or stupid or just, you know, no backbone. But once I got the diagnosis and the appropriate treatment, it all turned around for me, and then I realized, well, I'm living a life with a woman who has a brain - an ADHD brain. And once I understood that piece of it, it all came together for me.

CONAN: Had - I understand you got your diagnosis after your child got diagnosed, and I gather that's the case for many adults.

MATLEN: Exactly, that's a pretty typical story from what I understand. My daughter was diagnosed with ADHD at a very early age, and in my quest for trying to help her, I was reading, and reading, and reading and going to support groups for parents who have children with ADHD. And I just, you know, got any kind of help I possibly could to help her. And the oddest thing happened, was as I was reading books on children with ADHD, I came across a book on adults with ADHD, which back then, in the early '90s, was - there were very few books out there, you know, unlike what we have now.

So I read a book, and then the lights went on. And I thought gee, you know, this sounds like my part - you know, some of my family. I didn't even see myself in that particular book; I saw some family members. And I started reading more about adults with ADHD. And I came upon a book by Sari Solden, who wrote a groundbreaking book called "Women with Attention Deficit Disorder," and at that point I knew this is what was going on with me.

CONAN: Well, we want to hear from those - excuse me, forgive me. We want to hear from those of you who are living with ADHD as adults. And what don't we know about how that affects your life? Give us a call, 800-989-8255. Email us, talk@npr.org. And Michelle(ph) is on the line with us from Tucson.

MICHELLE: That's Tempe.

CONAN: Oh Tempe, excuse me. I saw a T and Arizona, and I jumped to the wrong conclusion.

MICHELLE: That's OK. Hi, yes, first of all I want to say I love your show, and I'm sorry to hear that you won't be (unintelligible) anymore. And I've been an avid listener. And I've tried to call many times, and it happened to be this topic. When I learned this morning you were doing this topic, I immediately screamed, that's me.

I turned 40 six months ago, and then I was diagnosed with ADHD one month ago. And it was - I've kind of been an ADD denier for a long time. Like I remember everybody's little brother or little sister being diagnosed with it when I was in high school, and we'd call it squirm pills, he's on squirm pills. And I always thought it was something for teenage boys.

And all three of my sisters, who are younger than me - and considerably younger than me - had been diagnosed, and two of my adult aunts. And one of my aunts said to me: I'm a Ph.D. candidate at 40. It's taking me so long to get a hold of - you know, to get my coursework done, because I'd finish things 85 percent, 90 percent. I ruined a book contract that way. I got it 90 percent finished, and I just didn't - I was like afraid and ashamed to do anything with it because I was behind deadline, and I ended up, like, totally destroying it.

And my aunt told me I think you have ADD. And I said I don't think I'd have been able to get this far if I had ADD. And she said: I don't think you'd be able to get this far if you didn't have ADD. I think you need to go get checked. And so I went to (unintelligible) recommended a doctor's for me, and I went to the doctor, and she asked me a question, and I was answering it at three separate times, like plates spinning.

And she said it is absolutely clear, you have ADHD. So when the HD came into place, you know, like I'm a hyper on top of this, what? And then it just started making so much sense. Like I spent the '90s climbing mountains and mountain biking just to - you know, just to be able to think enough to write an essay or to write a poem.

And so now it makes sense, and I'm on Adderall, and I really - and it's only been maybe 20 days. And I was driving home from the appointment with my doctor today to talk about my progress when your show came on. So I just thought it was, like, perfect timing. But it's difficult.

CONAN: And again it's like the curtains parted, and all of a sudden you could understand a lot of things.

MICHELLE: Well yes, and I really - what I'm looking for in the treatment and the appointments and in the medication is how to harness it, to look for techniques and ways. And that's my question to people who have been living with this, with the knowledge of it for longer than I have, is how do you harness this in order to make successes?

I would love to fix my broken book contract. I would love to finish my dissertation and then to start a career of - yes late in life, but start a career of projects. And so I'm really, like, kind of looking for techniques and advice on how do you harness this because it can be a gift in some senses. I mean, there is an intense amount of creativity, I feel. But I just want to know how to channel it in the right way and finish things.

CONAN: Well, let's ask Terry Matlen if you can provide any advice for Michelle.

MATLEN: Yeah, I think that's a great question that she brings up. She's also newly diagnosed so there's a lot of things probably just swishing through your head right now. But, you know, what we find, what helped me was consulting with a therapist and working with a coach. I even brought in a professional organizer, who helped me put together my house.

I mean for me, when you have ADHD, everything is all or none. You just, you know, you walk into a room, and everything looks cluttered, and you don't know where to begin.

MICHELLE: Oh my gosh, that's my house. And it frustrates me.

MATLEN: And so I enlisted the help of these kinds of professionals to get me on track and then reading a lot and also going to support groups and conferences. When I went to my first adult conference through ADDA - add.org is their website - I went to their big conference, and it was life-altering in that it was the first time I was with people like me.

So when you're in a building with 500 other adults with ADHD, and we're all losing our keys to our room, bumping into the walls and forgetting each other - you know, other people's names, you feel for the first time in your life, at least for me, like you belong; that people really and truly understand you. So getting that kind of support really was a huge thing for me.

CONAN: Michelle, good luck, and we're glad you finally got the diagnosis, and thanks very much for the kind words.

MICHELLE: Thank you, Neal, and thanks for all your years of great work, and good luck to you.

CONAN: Thank you. Joining us now is Dr. Russell Barkley, Dr. Barkley a professor at the departments of psychiatry and pediatrics at the Medical University of South Carolina, also the author of several books, including "Taking Charge of Adult ADHD" and joins us by phone from his home in Charleston. Good to have you with us today.

RUSSELL BARKLEY: Thanks so much, I appreciate being on the program.

CONAN: And a clarification, as our previous caller and guests have noted, if they had ADHD, they probably had it when they were born.

BARKLEY: More than likely, although there are some instances where it can be acquired through brain injuries. Most of those injuries take place during the pregnancy or fetal development of the child. But it is possible for a very small percentage of people to acquire it through head injuries or other medical problems that might affect specific structures in the brain. But that's unusual.

More times than not, it's highly genetic and often there in childhood.

CONAN: And we hear ADD and ADHD sometimes used almost interchangeably. Should they be?

BARKLEY: Well, they were interchangeable. ADD is the 1980s term for what eventually into ADHD. Unfortunately, modern-day clinicians continue to use the ADD label for people who are predominately inattentive but don't have the hyperactivity or the poor impulse control that goes with the more common combined type or standard ADHD.

We're now learning, by the way, Neal, that a subset of these people who are being called ADD may well have a second attention disorder that's only come to the attention of scientists within the last decade. And they're quite different, actually, from people with ADHD. I don't want to spend much of your time on it, but at some point later if you want to revisit that, I'd be happy to talk about it.

We've just finished the first study of adults in the United States who might have this other attention disorder that gets misdiagnosed as ADD or ADHD. But yes indeed, it would be something that goes back to childhood, and whether you call it ADD or ADHD, it is indeed a serious problem for people, particularly in their self-regulation.

CONAN: Self-regulation, and as we heard, it can be a lot more than just, well, losing your keys or leaving the eggs on to boil too long. It can come along with problems like depression.

BARKLEY: Indeed, what we often find is that the A in ADHD is a gross misnomer and I think oversimplifies the seriousness and pervasiveness of the problem. It's really a disorder in the brain's executive system, which is the system that allows people to regulate their own behavior, stay organized, manage time, show self-restraint, control their emotions to a socially acceptable level and so on.

And those are the areas that you're going to see much more problematic in these adults than just being inattentive or hyperactive.

CONAN: Well, Dr. Barkley, stay with us, and we're also going to ask Terry Matlen to stay with us. If you've an adult living with ADHD, call, tell us what we don't know about that. Our phone number is 800-989-8255. Email us, talk@npr.org. We'll be back after a short break. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(SOUNDBITE OF MUSIC)

CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. The challenges of ADHD for children are well-known: trouble focusing, impulsive behavior, inattention. It's long been assumed most children eventually grow out of it. As it turns out, for many, ADHD is bound to be a lifelong problem. Many adults who deal with it don't know it. They aren't being diagnosed or treated. Many who presumably grew out of it actually deal with additional problems, including substance abuse, anxiety, depression.

If you're an adult living with ADHD, call, tell us your story. What don't we understand? 800-989-8255. Email talk@npr.org. You can find us on Twitter, @totn. Our guest, Dr. Russell Barkley, author of "Taking Charge of Adult ADHD." Also with us is Terry Matlen, who was diagnosed with ADHD in her mid-40s, and she's the author of "Survival Tips for Women With ADHD."

Let's see if we can get another caller on the line. This is Dave, Dave on the line with us from Charleston.

DAVE: Good afternoon, thanks for taking my call, Neal.

CONAN: Sure, go ahead, please.

DAVE: Yeah, it's good to know - I wasn't aware that Dr. Barkley was in the neighborhood. I'll be on his answering machine soon enough, I think. I'm 63. I was diagnosed about 15 years ago, placed on medication, psychotherapy. And despite that, life is still very chaotic. I have a very checkered job history. It's difficult. Despite being well-qualified and motivated, the way my brain functions makes it very difficult for me to maintain employment.

And I'm fortunate to have a very supportive family and especially my wife, but this - even without this - to give you an idea, at one time I was emptying the dishwasher, and the next thing I knew, I was cutting the lawn. And it's comforting to hear that other people have the same difficulties, but it's a very lonely disorder.

CONAN: And forgive me, Dave, but it sounds like for you it didn't all of a sudden, aha, explain everything, and you could work towards getting better.

DAVE: Oh no, no. I knew there was something wrong with me for a long time. I shouldn't say wrong, and my brain functioned very differently than other people, that I wasn't able - I didn't have the stick-to-itiveness that I admired in other people and that I wanted to have for myself. And it's reflected in many aspects of my life: my neatness, my ability to follow instructions to the nth degree. It's very - it's a very compromising situation, a lifelong situation.

CONAN: And because it was not diagnosed for so long, I'm - let me ask, Dave, did you self-medicate?

DAVE: Oh yes, yes. I've had difficulties with alcohol and with drug abuse. And it's not the way to go.

CONAN: No.

DAVE: To hear that I'm not alone and that there's more help available that I haven't availed of, that's comforting. So I'll be going down that road, I hope.

CONAN: Well, let's hope so, Dave. Good luck, thanks very much for the call.

DAVE: Thank you.

CONAN: And Dr. Barkley, I just wanted to ask: Yes, there are some for whom this is an aha moment, and the waters part, the window opens; others continue to deal with a lot of very difficult problems.

BARKLEY: Well, that's indeed true, and I think the story you just heard is also a typical one, and that is by recognizing the disorder, it removes the condition from the domain of sort of a moral failing of people feel like they suffer from compared to other people, and it puts into the realm of the mental health sciences and where there is evidence for the neurobiological basis to it.

That doesn't immediately solve their problem, but that change in perspective, as both Terry and your other caller have mentioned, is a very important one, even if it doesn't lead immediately to you having a dramatic improvement in your symptoms. That, of course, as Terry suggested, takes time, may take medication, certainly requires working with others within your family as well as mental health services to try to compensate for, cope with your disorder.

And as the caller suggested, this can take a little time. It's even more complicated when there are other disorders that are linking up with it. Over 80 percent of adults with ADHD have at least one other disorder. Typically it is either demoralization and depression or anxiety disorders or learning disabilities and to a lesser extent difficulties with substance use and abuse, as the caller mentioned, as well.

So a very typical pattern that was portrayed there. But the diagnosis alone, I think, helps people to reframe their disorder and their view of themselves from one of a personal failing or a lifestyle choice to one of understanding that they really do have a neurobiological handicap.

CONAN: Here's an email from Emily in Minnesota, who notes: Adderall is expensive without insurance. It's hard to function without it. And I have to ask, Terry Matlen, you also mentioned coaches and that sort of thing. Those can be expensive, too.

MATLEN: They can be, and that's part of the problem with the current atmosphere in the ADHD professional world, is we need more help to help, you know, support adults with ADHD if they can't afford medication, if they can't afford coaching. There are some alternatives. There are some coaches who will work at a lower fee. There are programs online that people can go to where it's a little bit more cost-effective.

I think one of the best things is to be around other people who have ADHD and to share tips with each other, read books. It is tough for a lot of people, though, to afford some of these professional services.

CONAN: Here's an email we have - excuse me, a tweet we have from NPR senior strategist Andy Carvin: I was diagnosed with adult ADHD just over two years ago. I would zone out when talking to people, always worried I'd do it when live on TOTN. He adds: ADHD has always been a bit under the radar for me, but stress started to bring it out. It was making it hard to function at work.

And, well, that's interesting to hear from Andy Carvin on that. He's just got a new book out, and he's, well, succeeding very well at work. But ADHD clearly still a problem, as well. Let's see if we can go next to Chris(ph), Chris with us from California, Modesto.

CHRIS: Yeah, thank you very much, a great show. I was really fortunate. I was diagnosed around 32, 33. And I had a really good doctor that, you know, I struggled through grad school, begging my professors to let me, you know, finish my paper. I got lots of extensions. But once I got the diagnosis, my wife was very supportive. And she is the complete opposite of ADD: very organized, very task oriented.

And having her (technical difficulties) what it was, I realized that she could be a really good model and it really helped a lot. And now we have two young kids, and in the back of my mind I keep thinking, and I don't want to project, you know, oh, is this behavior because of ADHD or is this just a six-year-old being a six-year-old, but I think for me having a very supportive family and a very supportive work environment.

I've been fortunate to work in K-12 technology, and because we have students, you know, with ADD and such, it's a very supportive environment. And once I realized what I had and I talked to my boss about it, they were even more supportive. So it really helped me a lot to have a good home base to work with.

But then, you know, I kind of have a little bit of concerns into the future of, you know, what do I need to look out for in my kids, and what can I do now to sort of help them come up with coping strategies because medications worked for me to an extent, but I think it only gets you up sort of like a few steps on the ladder, and the rest is really having good strategies and really having good support at home, I think.

CONAN: Dr. Barkley, clearly a lot of adults with ADHD must worry about passing it along to their children, as there's a strong genetic component, as you mentioned earlier. Any tips you might give people like Chris?

BARKLEY: Well, Chris is absolutely correct. There is a higher risk in his children. It doesn't guarantee it, but the evidence available suggests that between a third and a half of the children of adults with ADHD - now we're talking here about the genetic type of the disorder - are likely to develop the disorder or at least some variation of it. It doesn't necessarily need to be as severe as we see in the parent, though often it is.

I think the first thing is to do what he is already doing, which is to monitor the situation, look for whether there is any evidence coming from others, such as scout leaders, teachers - I'm not sure what his children's grades are - but look for any signs that there is some impairment developing or some symptoms of the disorder that are developing. And that would signal that you may need to start getting some early intervention for the children.

So I think the first is to do what he's doing. Monitor it; listen for feedback from others; look for evidence of impairment; and then act on that quickly. Oftentimes, as Terry well knows, the people with ADHD, particularly children, may go for three to five years before they get appropriately diagnosed and treated, and those are three to five lost years in the life of that child that we can't recover for that child.

So, you know, do what he's doing. The second thing is that there are plenty of parents' books out there on home management strategies if he is beginning to notice. Does his children have difficulty with the stick-to-itiveness, with the organization, with handling such things as time and deadlines as they get older and start to have these deadlines imposed upon them by school? Are they having difficulties with other children?

There are lots of tips in the literature, some on my website. In fact, I have 80 recommendations for teachers on that website that they can use to help with ADHD children. So I don't want to go into any of those details here for the sake of time, but there's plenty of advice out there for how to restructure the environment around children so they're less impaired by their emerging symptoms of the disorder.

CONAN: Chris, good luck.

CHRIS: Thank you. I have just a little quick follow-up. Is - does the doctor or does any of your guests, is medication really inevitable, or are there cases where if you have a structure or a home environment or you intervene early enough that medication isn't going to be the absolute solution or going to be part of it?

CONAN: Dr. Barkley, is medication inevitable, and is it inevitably Adderall?

BARKLEY: It is not inevitable, but I will tell you that the majority will be on it at some time in their life. In our longitudinal studies that we've done, plus the clinics that we've run for ADHD, it's somewhere between 65 and 80 percent of people with the disorder will eventually try medication as part of their treatment package.

Some will have to try it right away because the disorder is quite severe, as you heard from our last caller, about it's affecting their job. It's affecting relationships with others. They're developing depression. That needs to be treated right away, and often the medication is the quickest thing we have to get control over the symptoms.

Also we find if they have another disorder with their ADHD, we often have to bring in the medication to help get control of it because we can't treat the other disorders until the ADHD is managed, and that's because ADHD is a self-regulation disorder. And there's no way we can get you to engage in treatment and reorganize your life and benefit from self-improvement programs if, underneath all of that, you're having a lot of trouble with self-regulation.

So that's why ADHD is almost always the first disorder to get treated before we try to tackle depression, anxiety, drug use, marital problems because of its ubiquitous effect on self-regulation.

So all that said, there are milder cases that don't have other disorders that are sort of marginal and that may not need medication or need it right away and might be able to get away with these accommodations that are in mine and Terry's books and that you can find on the Internet as well, particularly at the helpforadhd.org website, which is a website co-sponsored by CHADD, our national foundation for ADHD in children and adults, as well as the National Institute of Mental Health have a very fine website with advice there as well.

So those things may be beneficial, along with changes in the curriculum at school, modifying the environment around the child in the classroom so that they're not as impaired by the disorder. All of those things can help kick-start the child's improvement over their ADHD.

But eventually, I'll just tell you, at least two-thirds of the people we see will be on medication at some point, and it doesn't have to be Adderall. There are plenty of other medications out there. There, of course, are the stimulants like methylphenidate, which you know is Ritalin or Focalin. There are - and Concerta as well. And then there are the amphetamines of which Adderall and Vyvanse and Dexedrine.

But we also have nonstimulants now that have been developed in the last decade such as atomoxetine, which is Strattera, or guanfacine, which is marketed as Intuniv. So there's lots of choices out there, which is a good thing because not everybody responds to the same drug, the same mechanism, the same dose and so on. So the more we can tailor medications to individuals, the better off things are going to be.

CONAN: Chris, again, thanks very much for the call.

CHRIS: Thank you so much.

CONAN: We're talking about adults with ADHD. You're listening to TALK OF THE NATION from NPR News. And our guests, let me introduce, Dr. Russell Barkley, a professor in the departments of psychiatry and pediatrics at the Medical University of South Carolina. Also with us is Terry Matlen, who is diagnosed with ADHD in her mid-19 - in her mid-40s and author of "Survival Tips for Women with ADHD."

And let's see if we can get Brandy(ph) on the line, Brandy with us from Martin, Tennessee.

BRANDY: Hi. I'm so excited. I'm on TALK OF THE NATION.

CONAN: Oh, thank you.

BRANDY: Thanks for taking my call. I'm 25, and I diagnosed myself at 23. And I was pretty certain that I had ADD and always had ADD. But coming from a generation of almost every person who's diagnosed from - with ADD, my parents just always said, no, we're not putting you on Ritalin. There's no way. Sorry, you can't sleep at night, but your grades are perfect and you love to read, so there's no way you have ADD.

And eventually I read a book called "Delivered to Distraction," I think, and went to my psychologist and made about six appointments. And he told me that I did. I had the third type of ADD that's most common in women. And...

CONAN: And how has it been to live with it?

BRANDY: I refused medication, and I just heard the doctor talking about Adderall and how there's nonstimulants as well, which is very informative, by the way. But I just come from a generation where so many kids are on Adderall, and it's just not a good thing that I was afraid to even start taking it. And the best thing that has happened to me ever since is just knowing that what I thought I had is what I have.

CONAN: Mm-hmm. So hearing the diagnosis - well, coming to that conclusion and then hearing the diagnosis, that's the most important part.

BRANDY: Exactly. Now I can because I do fully understand the disorder. I read so many books about it. I know it's dealing with the prefrontal cortex. I know that it pulls from the imagination. I don't consider having ADD a curse. I consider it a blessing. I love my personality. Yeah, it's a little bit harder day to day, but I feel like everybody, you know, has something that's a little bit harder for them day to day.

CONAN: And I don't want to interrupt you, Brandy, but I wanted to ask Terry Matlen. Have you, too, come to peace with it?

MATLEN: Have I come to...

CONAN: Peace with it.

MATLEN: Peace with it. I have but I neglected to explain in the beginning of my conversation that when I did get the diagnosis at first I was in denial. I didn't think that I had it, I didn't know much about it. It was, you know, a very different era in the early '90s, though I just couldn't believe that that was what was going on with me and I went to at least four different clinicians to make sure that this is what was really going on, and finally when it, you know, it dawned on me that this really was the thing that was keeping me back, I began to move forward much like the speaker is explaining right now. And that I just took it and ran. And, you know, as I said earlier, use different accommodations and found support and was able to accept it and run with it.

CONAN: Well, Brandy, thanks very much for the phone call and good luck.

BRANDY: Oh, thank you. You're welcome. Have a good day.

CONAN: You too. And I'd like to thank our guests, Terry Matlen who joined us from her home in Detroit, appreciate it.

MATLEN: It is nice to be here. Thank you for having me.

CONAN: And Dr. Russell Barkley, the professor at the departments of psychiatry and pediatrics at the Medical University of South Carolina joining us from Charleston. Thank you very much for your time.

BARKLEY: Thank you, sir.

CONAN: When we come back, we'll hear about the school shooting at Oikos University in Oakland one year ago today. A tragedy that somehow does not get mentioned alongside Aurora, Newtown and elsewhere. Stay with us. TALK OF THE NATION from NPR News.

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