Kim Mills: Attention deficit hyperactivity disorder, or ADHD, was originally thought of as a disorder of childhood. And for many people, the image that comes to mind when they think of ADHD is an eight-year-old boy who can't sit still in class. But in recent decades, scientists have gained a more sophisticated understanding of the causes of ADHD and have begun to realize that it can be a lifelong disorder with lifelong consequences.
Estimates of the prevalence of ADHD vary, but data from the Centers for Disease Control and Prevention found that in 2019, 8.8% of all children ages three to 17 had ever received a diagnosis of ADHD. That prevalence has risen fairly steadily since the 1990s. How has our understanding of ADHD changed over those years? What do we know about how it looks in childhood adolescence and adulthood? Is it possible to develop ADHD as an adult? What are the most effective treatments? And how has the pandemic affected children and adults with the disorder?
Welcome to Speaking of Psychology, the flagship podcast of the American Psychological Association that examines the links between psychological science and everyday life. I'm Kim Mills.
Our guest today is Dr. Maggie Sibley, a clinical psychologist at Seattle Children's Hospital and an associate professor of psychiatry and behavioral sciences at the University of Washington School of Medicine. Dr. Sibley's work focuses on the diagnosis and treatment of ADHD in adolescents and young adults. She's developed a treatment therapy called STAND, Supporting Teens' Autonomy Daily, to help teens with ADHD and their parents. She's also co-authored more than 75 scientific papers on ADHD, including a recent study that found for most people diagnosed as children, ADHD symptoms continue into adulthood.
Thank you for joining us today. Dr. Sibley.
Margaret Sibley, PhD: I'm happy to be here.
Mills: Let's start with the basics. I mentioned in the introduction that many people have a mental image of a person with ADHD as a hyperactive young child, usually a boy, who can't pay attention in class. But that's a very incomplete picture of ADHD. Can you tell us a little more about what ADHD actually entails, how it's defined and how it's diagnosed?
Sibley: ADHD is a disorder with biological underpinnings, and we've done decades of research now that shows that there is a genetic component to ADHD for many people, and that the genes that seem to be related to ADHD are related to the chemical in the brain called dopamine. Dopamine is a chemical in your brain that modulates your response to rewards. So, people with ADHD may have trouble regulating their attention, may have trouble being motivated, may have trouble with controlling their cognition, because the chemical in their brain, dopamine, is working a little bit differently than it is for the average person.
So in young children, you're going to see this translate into trouble controlling your behavior and hyperactivity, and trouble paying attention in school. But as people get older, you're going to see the symptoms of ADHD change a little bit. In adolescents, you're going to see the hyperactivity go down and a lot more of the impairment has to do with your attention control and your ability to stay organized and stay motivated and overcome things like procrastination.
Even in adulthood, the disorder changes even more, and you're going to see people struggle with things like staying on top of their finances, being able to hold down a steady job, stay on task, being able to do work that sometimes isn't the most appealing and keep themselves motivated. So, it's really that link of being able to control the way you think and the way you act that strings together what ADHD is across the lifespan.
Mills: So, there are factors that have to be present though, in order for somebody to get a real clinical diagnosis of ADHD. Can you talk about what those are?
Sibley: Sure. So, in order to be diagnosed with ADHD, you have to show this pattern of behavior that is related to attention and motivation and cognitive control. But at the same time, those difficulties have to be severe enough that they actually cause a real problem in a person's life. So, everyone may have tendencies to sometimes have trouble staying on task or focusing sometimes, but a person with ADHD is going to experience that in multiple settings. So, whether it's at home and at work, or at school and with social activities, you're going to see it in a pattern across your life. You're also going to see that impairment, it's going to mean that you're going to have real problems in your life because of these symptoms. It's going to be for people in school, their grades aren't as high as they could be. For people who have jobs, they might have trouble holding down the jobs. Socially, you might find yourself with problematic relationships with other people or difficulty holding down a romantic relationship because you're having trouble controlling your thoughts and your behaviors.
Mills: You published a paper in August that found only about 10% of people diagnosed with ADHD as children will grow out of it as adults. Can you talk about that research?
Sibley: So, I'm lucky to be a part of the Multimodal Treatment Study of ADHD, which was a big study done in the 1990s where about 500 children with ADHD got different treatments, medication treatments, behavioral treatments, and a little bit of both for some of the groups. Then these children were followed until fairly recently, until they were about age 25. So, we were able to, every two years or so, check in, find out what the symptoms and the functioning of these kids were like by asking their parents, by asking their teachers, by asking themselves.
With that really complete picture of how their ADHD was changing over time, what we saw was that there's only about 10% of this group of children who continue to steadily have a high level of ADHD all the way to age 25. There's about another 10% who seemed to have pretty steadily overcome their ADHD and stayed recovered. And then most of the other people are somewhere in the middle where their ADHD seems to go up or down over time, depending on their circumstances. So, there might be some years of their life where their ADHD actually looked more severe than other years. And if that's the case, that opens up a lot of questions about, well, what causes those fluctuations and are we really surprised that most people are still struggling with ADHD long term? I don't think so, because as a disorder with a biological underpinning that's chronic, just like diabetes or anything else that you're born with that you struggle with for your life, you wouldn't expect it to just go away, even though we can learn to manage it and have folks do a lot better.
Mills: All the people in the study, were they in treatment at the time?
Sibley: Well, at the time of the study, they were given treatments as a part of this study. So they all got 14 months of treatment. Then after that, they no longer got treatments from the research team, but of course, many of them went and got treatment out in their communities, whether it was medication or seeing a psychologist and getting therapy. So, there's still an open question about what role treatment has in helping people overcome their symptoms but we do have evidence-based treatments for ADHD that do help people both in the short term and in the long term. So certainly, that's a piece of the picture.
Mills: Now, there's been a rise in recent years in the number of people being diagnosed with ADHD for the first time in adulthood. Is it possible to develop ADHD as an adult, or did the people who were being diagnosed as adults probably have it as children, but just weren't diagnosed at the time?
Sibley: This is a really interesting question. So first of all, we think there's a big group that I would call “late-identified ADHD,” which means they probably had ADHD or tendencies that are similar to ADHD the whole time, but for various reasons, they were not noticed until they were an adult and they were able to speak up for themselves. We already know some of the factors that can lead to that. For example, ADHD is a lot less recognized in girls and women because they aren't so hyperactive and loud about their symptoms. So sometimes, people think that they're just a little bit spacey and they don't actually get the diagnosis. We also know in people of color or people who might come from cultures where mental health difficulties are not recognized as mental health difficulties, that they may not come to the attention of professionals or be recognized as well.
So certainly, better recognition in our school systems where educators are learning to keep their eyes out for kids who are struggling in this area, has helped us learn to see kids at a earlier age that may have ADHD, but still we have a 3% rate of ADHD in adulthood overall and, as you were saying, something like 8% in childhood. So, if you agree that ADHD is a chronic disorder, we're still missing a lot of people, even though maybe now we're capturing more people. Can it come on as an adult and never have any symptoms earlier? That's still a bit of a debated question. I think it depends on how you define ADHD, because if you consider any difficulties with paying attention, or focusing, or controlling your behavior or your thoughts as a form of ADHD, you might be able to say yes, because we know things like going through trauma, or things like having experiences, maybe even where you were involved with substances and then you stopped, can impact your cognition in ways that look like ADHD. There's a lot of ADHD mimics out there, and so it's really important when people are getting diagnosed as adults, that they go to a professional who can tell the difference between our classic ADHD that has that biological underpinning and starts in childhood and something else that has a similar symptoms, but might have a different source of where it came from.
Mills: So speaking of prevalence, there's an idea out there, that's been around for years, that ADHD is over-diagnosed and that some children are given medication when they don't really need it. I mean, isn't it just the nature of childhood that some kids are rambunctious and have trouble paying attention in school? And mightn't it be a case of overworked and overburdened parents who want something to control their children because they can't do it themselves? Are these valid concerns?
Sibley: I like to say the ADHD is misdiagnosed, not over or underdiagnosed, because like we just talked about, there are some people who are being missed and there are also some people who may be being given a diagnosis, somewhat liberally. I think that that is up to any individual provider about how confident they are when they make an ADHD diagnosis and how severe symptom presentation that provider feels they need to see in order to give the diagnosis. So, I definitely think there are individuals somewhere out there who were probably given a liberal diagnosis. On the other hand, I don't think that's an overwhelming trend of most people who have ADHD were given a diagnosis, that's a stretch.
I think one of the places we have to be most careful is when there's an incentive to have an ADHD diagnosis. So you can see this in college students, for example, who I think in the last 10 to 15 years, we've seen this growth in college students who are pretty strategic, who go to the right provider and are able to get a prescription for a stimulant medication, which will help anyone study, it doesn't matter if you have ADHD or not. So, that doesn't necessarily drive up our rates of ADHD diagnosis in the country alone but there are certain subgroups where providers have to be careful and be very thorough when they're diagnosing, because people may have ulterior motives for getting that diagnosis.
Mills: So, you mentioned medication as one of the treatment options, what are the various options that are available and are they different depending on age for children, for adolescents, for adults?
Sibley: Yeah. I mean, overall there's two categories of treatment. So one is the medications, most of them are stimulant medications, though there are some non-stimulants and then you're going to have your psychological treatments, which are, it's a CBT-like model in adults, and obviously when you're with younger children, it's going to be more of a behavior therapy, parent training-like model. But these two types of treatments do very different things.
So, if you take the medication, while it's in your system, it is going to directly intervene on that chemical dopamine, and it's going to directly help your cognition feel more under control. So, if somebody hasn't taken a stimulant medication and they're curious what it feels like, it would be like having a really good cup of coffee with none of the jitters and none of the side effects. You have the focus ability without the profile of things that feel uncomfortable when you start giving yourself a stimulant. So, if you can imagine that that helps people focus better and can control their cognition, but as soon as it wears off, the person is back to their normal self, still experiencing those ADHD symptoms.
The cognitive behavioral treatments are going to work on a couple of things, teaching people coping skills, so strategies for how they can stay organized, and when we're working with the parents of the younger kids, it's teaching the parents to set up routines and create situations that help people with ADHD function their best. Then also, helping people with ADHD identify areas in their life that they might be able to be successful, what kinds of environments or settings are most conducive to them avoiding the impact of their symptoms.
So, whether that is for an adult, young adult may be trying to figure out what kind of educational or career path they want to go into, they might recognize that, "You know what? I do best when I'm active, when I'm outside, when I'm working with my hands. I don't do as well sitting at a computer." So, helping people get that self-awareness and make decisions to help them succeed.
So, both of those classes of treatments are effective. They help in complementary ways. I'm a big fan of doing both or trying both to see how they can go hand-in-hand for an individual person. Ultimately though, there's no right way to decide to get treated. Both of those options can be very helpful.
Mills: So, some children are diagnosed as early as three years old, which leads me to the question of what's the earliest age at which it's considered to give any of these medications to children?
Sibley: So, there's guidelines out there for giving medication to preschoolers, and that's about as young as you'll see it done. There's a lot of controversy out there about that. I'm not a pediatrician, but I work with pediatricians, and I think a lot of pediatricians even feel uncomfortable giving that medication and will refer to a psychiatrist or a specialist to really be careful before making a decision like that for a young child.
I think one of the big reasons for that is because disruptive and hyperactive behavior is somewhat normative at that young age. So, it's really hard to tell the difference between somebody who's just a three-year-old and somebody who's actually got a chronic disorder. So, there's a lot of caution in just not wanting to mis-give the stimulant medication. It's not because we think stimulant medication is harmful at that age. So, you can diagnose ADHD in preschoolers, but I think there's less stability in that diagnosis when it's given that young, because it's hard developmentally to decide who has it and who doesn't.
Mills: And then what do we know about the long-term effects of taking these medications? So if you start taking Adderall or whatever one of these medications might be, as a child, how likely is it that you will have to take it for the rest of your life? And what do we know about what that might do to you physiologically?
Sibley: There's no definitive answer on this at all, but there's two areas of research ongoing and possible speculation on this. The first is on growth. So, there is some evidence from some of the longitudinal studies that if you take stimulant medication for prolonged period of time, it could affect your growth. This makes sense, because the stimulant medications have a direct effect on appetite suppression. So, kids who are taking stimulant medications for most of the days of the year are getting less food intake and therefore that's less nutrients, and therefore they're not growing as tall and as big as the kids who are not on these medications.
So, there's evidence that you can recover that growth somewhat by just not taking the medications over the summer, for example, or possibly taking holidays on the weekend. But also we're talking about in some of these studies, less than two centimeters of adult height being impacted. So do people care about that level of growth? That's an open question. Some people may, and some people may not. So that's one area, it's still a little controversial because some of the findings are mixed, but something is probably there with that.
The other area is whether or not people somehow are going to be more interested in using substances or drugs as adults because they took this medication as children. So there's been work investigating that, and overall it suggests that no, that is not the case. If people take stimulant medications as children, it does not make them more likely to want to use drugs as adults. So, that I think is pretty thoroughly researched.
There is work investigating the idea of tolerance in ADHD medications. The idea that if you take medications for ADHD for a while, they start to wear off how effective they are on you. There is some evidence to suggest that may happen, and that may be one of the main reasons why people with ADHD after several years start wanting to stop taking them because they may not feel like they help as much as they used to do. This is an interesting research question that people are still looking at, whether it has to do with the fact that it's a ratio of how much you weigh, to how much of the pill you take and how many milligrams of the chemical you put in your body. As people grow up, technically you need to take more and more to keep the ratio of how much you weigh to how much chemical in balance, but we have limits in the country about how big of doses we give people. So, there is also this concern of people developing over time, a tolerance of the medication, and can you keep upping the dose to keep the medication working? At some point maybe you can't, so it could be the case that we can't really see a good effective medication for decades and decades, because eventually someone hits a ceiling where, its effects are lessened.
Mills: Research has shown that people with ADHD are at risk for a number of bad outcomes in their lives, and co-occurring disorders such as depression, addiction, and even suicide. Why is that? And how can treatment help?
Sibley: Well, ADHD is one of the biggest risk factors, like you say, for a lot of different negative outcomes. If you think about it, people with ADHD have trouble with self-control as the main feature of their disorder. So, they're going to have trouble sometimes with decision-making carefully, they also have trouble with risky behaviors because they have trouble with delaying their gratification and being patient for things and if they want something, sometimes they don't think about the consequences and they just go for it. So, you see some risky behavior going on there.
Another potential mechanism of this is people with ADHD, unfortunately experienced a lot of negative experiences in their life because they aren't as good at school as other kids sometimes, they don't have as many friends and they start to feel bad about themselves. They're getting a lot of negative feedback about the environment, and so that can lead to the development of self-esteem issues and other difficulties that can lead to things like depression and anxiety. So you can see, there's a cocktail brewing here, where not only do you have your ADHD symptoms, but some of the life experiences that come as a result of your ADHD symptoms create additional problems, and it can snowball for people if they don't get on the right track and have the right supports in their life. A big part of getting people treated when they're kids, when they're teenagers, even when they're adults, is to help people be aware of those risks and help them make good decisions to stay away from them.
Mills: That makes a lot of sense, so it's not ADHD itself, it's the reaction to it by the community at large, if you will?
Sibley: That's definitely a factor.
Mills: So, now that awareness is growing that ADHD can be a lifelong disorder, are there resources out there for adults who suspect that they might have it? Where should adults go to get information?
Sibley: Well, I think the best resource, public resource, out there is the CHADD website for Children and Adults with Attention-Deficit/Hyperactivity Disorder. This is one of the advocacy organizations for ADHD that is partnered with the Center for Disease Control, CDC, on getting good information out there for folks. So, if you're wondering if you have ADHD, or if you want to find out more about the disorder and what it's like and what your options are, definitely check out the CHADD, C-H-A-D-D website, and that's a great starting place.
Mills: Good, good, thank you. So of course, in every podcast lately, we have to ask a question related to the pandemic and here's yours. There've been a number of news articles in the past year that indicate that the pandemic has caused an uptick in ADHD diagnoses and parents seeking information about ADHD because of school disruptions and having their kids in the house all day. Does this track with what you've been seeing in your clinical research and in your practice?
Sibley: Yeah, absolutely. So think about this, ADHD is on a continuum, which means there are some people who clearly have very severe ADHD, and there are other people who might have a mild version of ADHD, or even just tendencies towards ADHD that could potentially get exacerbated or worsened if the right conditions are in place.
One of the conditions, especially for kids and teens who might be a little inattentive or have a little trouble with organization and procrastination, would be losing the structure of your school day and just being in one stationary place all day in front of a computer, trying to get your work done without the support of a teacher or the ability to interact with other kids in a physical way. So those conditions, I think have led many people with the milder ADHD to see more severe symptoms than they're usually having, and that's brought them to clinical attention where before maybe they wouldn't have been. So, I've seen it both in the research and also clinically, more people coming in, wondering if they could benefit from medication and particularly seeking out services for ADHD during this time.
Mills: So, last question. What do you think are the biggest open questions about ADHD right now? And as a result, what are you working on in your research?
Sibley: I think one of the biggest open questions is how do we get treatments that are effective out there to people who really need them, especially people in low resource situations, kids who maybe experience various adversities. So, if you have ADHD and you have adversity in your life, you're probably doubly struggling. So, it's been a disorder that people who regularly go into their pediatrician or have the resources to go see a private psychologist have always been able to access care for, but I do a lot of work in public schools and community mental health centers, trying to see how we could train folks to be able to do effective treatments in lower resource ways, because I think prevention is everything with this disorder. If you can control the symptoms early, you do avoid a lot of those negative outcomes.
I also think another piece of the puzzle is a bigger focus on the environmental factors that can lead the symptoms to go up or down. Because if we could identify factors that can help people's symptoms stay at bay, or at least partially remitted in a subclinical range, then we potentially can make interventions that can help harness those factors. So, we need to be getting more interviews in and more research experiences in with people with ADHD to find the patterns in their life of when they feel they do well and then leveraging that for people.
Mills: Well, thank you for joining me today, Dr. Sibley, I'm sure that our listeners are going to find your insights very, very helpful. Thank you.
Sibley: Thank you.
Mills: You can find previous episodes of Speaking of Psychology at www.speakingofpsychology.org or on Apple, Stitcher, Spotify, or wherever you get your favorite podcasts. And please leave us a review. If you have comments or ideas for future podcasts, you can email us at speakingofpsychology@apa.org. Speaking of Psychology is produced by Lea Winerman. Our sound editor is Chris Condayan.
Thank you for listening. For the American Psychological Association, I'm Kim Mills.
Margaret Sibley, PhD, is a clinical psychologist and researcher at the University of Washington and Seattle Children’s Hospital. She studies executive functioning, motivation, and attention problems in adolescents and young adults. Much of her research involves how to tell if an adult has ADHD and whether children with ADHD still have the disorder when they get older. She also does research on the best ways to package mental health treatments so that adolescents and families who need help will be more likely to seek and stay in therapy. Her research has received recognition from the scientific community. She has received grant funding from the National Institute of Mental Health and U.S. Department of Education. She also received early career awards from the Klingenstein Third Generation Foundation, the American Psychological Association, and Children and Adults with Attention Deficit/ Hyperactivity Disorder (CHADD).
