266: If ADHD Medication Doesn’t Help Kids Learn, What Does?

Barkley says that ADHD is like diabetes. It's a chronic condition that needs lifelong treatment. His own research ends up telling a different story.

And the majority of children in this study, 64% showed a markedly fluctuating course moving out of the diagnostic criteria, which is the blue dotted line you see along the bottom here at one follow-up point, only to move back into the diagnostic category at another follow-up and then move out of it again at the next follow-up and then back in, showing two to three or more transitions in and out of the disorder category over time.

So let's stop and think about that for a second, right? Almost two thirds of the people in the study met criteria for ADHD at some points in their lives and did not meet the criteria at other points. But ADHD is supposed to be a chronic brain disorder. If it's like diabetes caused by a biological deficit in your brain, why does it come and go? You don't move in and out of having diabetes. Your pancreas doesn't suddenly start working properly for a few years and then stop again.

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Hello and welcome to the Your Parenting Mojo podcast. When I finished recording my first episode on Dr. Russ Barkley's work on ADHD, I thought I was going to record one more episode to finish up this section, but the material ended up being long enough that it was kind of unmanageable for one episode. So I broke it up for you. So this episode really picks up where episode 264, who really decided your child needs ADHD medication, left off. If you haven't listened to that one yet, please do go back and do that first because this one assumes you have that context. In episode 264, we looked at what the medical model of ADHD says. We heard from Dr. Barkley directly about the diagnostic criteria and the comparisons to diabetes. We followed the money through the funding conflicts that Barkley, Dr. Joe Biederman, and other influential researchers have had with pharmaceutical companies. We looked at why diagnosis rates vary so much across states, and we heard about the scary life outcomes that Barkley warns about for people with ADHD. And just as a reminder, those outcomes might not be quite as awful as Barkley suggests. We ended there, right at the point where Barkley says medication is the answer. In this episode, we're going to look at whether the medical model actually holds together when you examine it closely. We'll start with how ADHD symptoms fluctuate over the course of a person's life. We'll look at the gap between what kids report about their own symptoms and what their parents say, and whose perspectives end up getting listened to in the diagnostic process and whose are ignored. Then we'll look at what medication does and doesn't do.

So parents in the U.S. at least are usually medicating kids because they want them to learn and succeed academically. In the UK, it's more likely to be linked to social outcomes. So we're going to look at what the research says about those academic outcomes. We'll hear from kids themselves about what being on these drugs is like and why most people stopped taking them within a few years. In what I am now pretty sure will be our final episode on Dr. Barkley's work, we will zoom out and ask some bigger questions about whether ADHD is actually a disorder. We'll look at the history of how these behaviors became a diagnosis, and we'll explore the causal pathways behind those scary life outcomes. Because it turns out there are steps between ADHD and reduced life expectancy that Barkley does not consider. And those steps give us very different ideas about what we can do to help. Now, just in case you didn't catch episode 264, I want to be sure that you know that if you or your child has ADHD, I'm not telling you that your symptoms are not real or that you or your child should not take medication. Some people really do find the medication helps them. But I also want to make sure you're aware of a broader set of research and ideas on this topic so you can make the best decision for you and your family. Okay, let's dive in. So remember how Barkley says that ADHD is like diabetes. It's a chronic condition that needs lifelong treatment. His own research ends up telling a different story.

Finally, and the majority of children in this study, 64% showed a markedly fluctuating course moving out of the diagnostic criteria, which is the blue dotted line you see along the bottom here, at one follow-up point, only to move back into the diagnostic category at another follow-up and then move out of it again at the next follow-up and then back in, showing two to three or more transitions in and out of the disorder category over time.

So let's stop and think about that for a second, right? Almost two thirds of the people in the study met criteria for ADHD at some points in their lives and did not meet the criteria at other points. But ADHD is supposed to be a chronic brain disorder. If it's like diabetes caused by a biological deficit in your brain, why does it come and go? You don't move in and out of having diabetes. Your pancreas doesn't suddenly start working properly for a few years and then stop again. And despite showing that 64% of people move in and out of the diagnostic category, Barkley then goes on to conclude that over 90% have high levels of symptoms throughout their lives.

Overall, the study is very important, I think, in showing that a very small minority of people with ADHD fully recover from disorder, that 90% or more will continue to have high levels of symptoms and even full disorder into adulthood, but that they may show a fluctuating course over time. And that's very important because it helps to explain why earlier studies may have found such a high rate of recovery among their children. It in part depended on who they asked, but as we see here, it in part depended on when did you ask. Had you followed them up again, they might well have had the disorder back again.

Okay, wait a minute. How can both of those things be true? If you moved out of the diagnostic category, that means you didn't have enough symptoms to meet the criteria anymore. By definition, you don't have high levels of symptoms. That's what it means to not meet diagnostic criteria. So which is it? Is ADHD a stable chronic condition where symptoms persist throughout life? Or is it something that comes and goes depending on what? Your environment, your stress level, what's happening in your life? And there's another piece of this puzzle that tells us something really important about whose perspective is considered here. When Barkley's Milwaukee study participants were 21 years old, only 4% of them self-reported having ADHD, but their parents reported rates that were 10 times higher.

By age 21, if you interviewed the children growing up with ADHD using a diagnostic interview, only about 4% reported enough symptoms to be diagnosed as ADHD in adulthood. However, if we interviewed your parents at that same follow-up period at age 21, the rate of disorder was 10 times higher, about 46% at that age met all criteria for the disorder. That's just to illustrate that it really depends on who you ask. It also shows that people growing up with ADHD, particularly during childhood, adolescence, and even early adulthood, under-report their number and severity of symptoms relative to other people who know them well. In this case, their parents. And their reliability of reporting of their symptoms doesn't begin to approach that of typical people until they get into their late 20s and usually early 30s, when we can begin to sort of take their word for it, if you will.

Barkley frames this as young adults under-reporting their symptoms compared to what their parents say. But couldn't you just as easily frame it as parents over-reporting? After all, who gets to decide whether someone has a disorder? The person living with it or someone observing them from the outside? There's a weird contradiction here where Barkley describes the purpose of the word often in the diagnostic criteria.

Of the 18 symptoms that are listed in the DSM, the word “often” is put in front of the symptom. That is not arbitrary or meaningless. That is there for a very good reason because most people, when presented with that symptom and the word often in it, do not endorse the symptom as occurring in them. So it's a way that begin to separate the wheat from the chafe, the abnormal from the normal, the extreme from the everyday. How often does that occur? If it occurs often or very often, we can consider it a symptom because it's likely to be seen in only about three to perhaps 10 to 15% of the population when it comes to that single behavior.

In that video, it seems like he's talking about adults who can accurately answer whether or not they often engage in a behavior. I don't think he could be talking about children because in the Attention Deficit Hyperactivity Disorder, a handbook for diagnosis and treatment book that he edited, which I refer to as the big handbook, Barkley's chapter on the psychological assessment of children says that, “children below ages nine to 12 years do not provide especially reliable reports of their own disruptive behavior”. Why might that be? If you've gotten into trouble for certain behaviors over and over, wouldn't you be likely to deny or minimize them? Have you ever denied doing something you've gotten in trouble for? I know I have. The entire diagnostic interview process he lays out is framed from the perspective of the child causing problems for the mother, and we know it's the mother because there's a question on what the child's behavior is like when father is home. If the mother indicates a problem, the interviewer is to ask questions like, what does the child do in this situation that bothers you? How do you feel about these problems? And on a scale of one meaning no problem and nine meaning a severe problem, how severe is this problem for you? The problem is defined as how the child's behavior affects the parent, not how the child is experiencing their own life. Barkley advises that children under 16 be excluded from the diagnostic interview as well as the clinician's feedback session, although they may be invited in at the end to be told about their diagnosis. So when we see that 4% of young adult’s self-report ADHD while their parents report rates that are 10 times higher, we might be seeing the legacy of a diagnostic process that never really asked the child what they thought in the first place.

The parent's perspective became the authoritative voice from day one, and the child learned that their experience didn't count as much as how their behavior affected others. In the Big Handbook, the chapter on symptoms, diagnosis, and subtyping and prevalence that Barkley co-authored notes that “people's ADHD symptoms can become more or less pronounced as a function of their environment and or the demands placed on them. During recess, a hyperactive boy's high level of activity would be appropriate for the situation and not unlike the activity level of his classmates. Consider the same child when he returns to class. As the situation changes and his classmates begin to rein in their activity levels, the boy with ADHD may continue to exhibit hyperactivity. In this setting, his symptoms become more apparent and more importantly, disruptive to himself and his classmates”. So let's think about what this example is really telling us, right? At recess, the hyperactive boy fits in perfectly. His high energy level matches his environment and he's indistinguishable from his peers. There's no disorder visible at all. But then a bell rings. The environment changes. Now the expectation is that all children should sit still, be quiet, and focus on whatever the teacher says to focus on. Some kids can make this shift really easily and the hyperactive kid can't. We call that a disorder in the child. But what if we thought about it differently? What if we said, well, this child's nervous system is optimized for active dynamic environments. We put him in that kind of environment, like during recess, and he's going to thrive. If we put him in a restrictive environment that demands stillness and sustained attention on tasks that he doesn't choose, he struggles. And what if many other kids would do better in a more active learning environment as well? The disorder only appears when there's a mismatch between the child and the environment. It's not so much a dysfunction in the child's brain. It's a clash between how the child's brain works and what the environment is demanding of them. And now I want to pick up another contradiction in the medical model. So if ADHD is a serious chronic biological disorder that leads to devastating outcomes when untreated, you'd probably expect people to stay on their treatment, right? Especially if the medication works as well as Barkley says it does.

The use of medication for ADHD is predicated on one premise: it works.

Paul Tuff, who wrote a long article in the New York Times that we discussed last time, said that stimulants don't improve academic achievement. But Barkley says this isn't the point.

What stimulants do is to help the individual show what they know. It doesn't improve what they know, but does allow them to perform it.

But there's another of those contradictions here. We wouldn't expect short-term academic achievement to increase if what kids know hasn't increased. But isn't the point that if the kids stay on the medication, that what they know should increase, which should be followed by academic achievement? Barkley says the studies looking at academic achievement were short-term, so they couldn't capture longer-term benefits. But if there was really something here, wouldn't the drug companies be all over that so they could advertise the additional benefit? The MTA study, which is the Multimodal Treatment of ADHD study, which is the largest and most comprehensive study of ADHD treatment ever conducted, followed 538 children for six to eight years. At the six and eight-year follow-ups, children who were still taking medication fared no better than children who weren't taking medication. And that was true even though the medicated kids had increased their average daily dose by 41%. Let me say that again. Kids taking higher doses of medication did no better academically than kids not taking medication at all. The study found no differences in standardized achievement test scores, no differences in teacher ratings of academic performance, no differences in grades earned in high school. Kids with ADHD who stayed on medication had a two-fold higher rate of grade retention, meaning they were held back a grade compared to their non-ADHD classmates, just like the kids who didn't stay on medication. The one exception was math achievement, where medication use showed some positive association, but that was it, just math, not reading, not overall academic performance. A more recent study by Pelham and colleagues tested this directly, and they took 173 children with ADHD and taught them actual curriculum units in social studies, science, and vocabulary in a controlled summer classroom setting. It was what's called a crossover design.

So each kid learned some units while on the medication and other units while on a placebo pill. So each child served as their own comparison. The medication had huge effect on the kids' behavior. Kids on medication completed 37% more arithmetic problems per minute. They committed 53% fewer rule violations per hour. They looked like model students. But when researchers tested whether the kids actually learned the material, there was no difference, none. Children didn't learn more vocabulary when medicated. They didn't retain more science content. The medication changed their behavior, but it did not help them learn. There was a small effect on test scores if you tested them while they were actively medicated, but that effect disappeared as soon as the medication wore off. It was a performance effect, not a learning effect. So short-term, medication helps kids comply. They sit still longer, they complete more worksheets, they break fewer rules. But longer term, it does not translate to better academic achievement or better learning. Now, Barkley might well say the Pelham summer classrooms are not the real world. They had small groups, they had trained teachers, they had a behavior management system that most schools don't have, and he'd be right about that. But that's kind of my point. Those classrooms show what's possible when you invest in the environment rather than relying on medication alone. The medication did not add any learning benefit on top of good teaching. So the question becomes, do we invest in creating better learning environments or do we keep relying on medication that changes behavior but doesn't help kids actually learn? And this is important because parents in the US where ADHD is seen primarily as affecting academic outcomes are medicating kids specifically because they think it will help their kids succeed academically. That's what they care about. They're not medicating their kids to get 37% more arithmetic problems completed per minute. They're medicating because they want their kids to learn, to graduate, and to have opportunities. And the medication does not deliver on that promise. Barkley says that medication has other benefits.

Even if the drugs don't improve achievement, which it appears they do over the long run, they do improve work completed, which results in better grades. They do improve behavior in school. They do improve peer relationships in school. They do result in reduced punishment of the individual in school, among other things that these medications do in that environment. And by the way, aren't those good things in their own right?

And he's right that those things matter. Parents care about whether their kids are getting in trouble at school. They care about grades. They care about whether their child has friends. But my question is then, is medication the only way or even the best way to achieve those outcomes? Let's look at what actually helped kids learn in the Pelham study. Remember, medication did not help kids learn, but something did help them learn. The kids did learn the material. So what was it? It was small group instruction. The classrooms were divided into small groups, anywhere from one to 11 kids, averaging around five or six kids per group. And teachers matched the instruction to each group's level. So they used evidence-based teaching strategies like brainstorming, think-pair-share, explicit modeling, and asking kids to summarize, clarify, and predict. They read test questions aloud to reduce the impact of reading difficulties. The study did use praise. It used a point system and strategic ignoring of kids' difficult behavior. And I would argue there are other practices they could have used that would have been equally or more effective than those. But the kids learned. They learned vocabulary, social studies, and science. Medication did not make them learn more, but good teaching did. Now, I can imagine what you're thinking at this point. Well, my kid's classroom has 25 or 30 kids in it, not five. My kid's teacher doesn't have time for small groups and individualized instruction. And you're absolutely right.

Most classrooms are not set up this way. But that's not because it's impossible. It's because we've decided, as a society, to fund schools in a way that makes large class sizes and standardized teaching the norm. The Pelham study shows us what's possible when we actually resource education appropriately. Small groups, differentiated instruction, evidence-based teaching strategies, these things work. They just require resources to be spent in classrooms rather than on medication. And it turns out these supports help all kids, not just kids diagnosed with ADHD. When you create a classroom with multiple small groups and flexible seating and movement breaks and individualized instruction, you're creating an environment where lots of different kinds of learners can succeed. Now, I want to shift gears a bit here to something that Barkley doesn't consider, and he actually thinks is irrelevant. And that is, for the kids who are taking medication, what is that experience like? Well, here are some quotes from kids who have been interviewed for research studies. It gave me headaches because they were too strong. It made me depressed and really moody after school. I just felt sickish all the time. My friends said I wasn't myself. I didn't laugh. I became an entirely different person. You become more boring. I'm sent to the office because I feel sick and I have to throw up. I just couldn't eat anything. And so here we get to a really important point about who decides whether to use medication. Barkley has been very clear that children should not have decision-making authority about their own treatment.

We should make children part of the decision-making process about using medication because we need to tell them that they could be shorter in adulthood if they take it. I mean, I was flabbergasted by this recommendation. It indicates that the author knows nothing about child development, about the role of parents in choosing treatments for their children. Children don't have a frontal lobe. At least it's all that very functional. They don't have the capacity to reason and to weigh the long and the short-term consequences of the actions and treatments that are being proposed for them. That's why we have parents. That's why children are not permitted to make these decisions. It's because they are not capable of making these kinds of sound, rational, reasonable, evidence-based decisions. The idea that we would allow the child to make these decisions on their own or even to have a voice in these decisions is incredible. I mean, it's ludicrous. I don't know any clinician that would do this.

A meta-analysis of studies on ADHD medication discontinuation found that after a year, only 40 to 60% of people who started medication are still on it, with everyone over 12 years old hovering around the 50% mark and only kids age four to 11 being higher than that, probably because their parents are making sure they take it. The downward trend continues so that by five years after beginning treatment, only 20% of kids and about 10% of people older than that are still taking medication. And these discontinuation rates, of course, far exceed the rates at which ADHD symptoms actually remit. So kids aren't stopping because their ADHD went away, they're stopping because they don't like how the medication makes them feel or because they don't see it helping them in ways that matter to them or because the side effects aren't worth whatever benefits they're getting. So we have a situation where the medication improves short-term compliance but not long-term learning. It doesn't translate to better academic achievement except possibly in math.

It comes with side effects ranging from appetite suppression to more serious medical concerns and is discontinued by the majority of people who take it within a few years. And yet the message from the medical model is keep taking it lifelong like insulin for diabetes. Children should not have a voice in this decision because they do not understand what is in their best interest. But maybe children understand something that the adults are missing. Maybe they understand that sitting still and completing worksheets is not the same as learning and that being compliant is not the same as thriving. Maybe they see that changing who you are to fit this rigid system is not worth it when there are other ways to succeed. Because what we know is that medication is not the only pathway to better outcomes. It's not even necessarily the best pathway. What kids actually need is teaching that meets them where they are. Classrooms with small groups and differentiated instruction. Teachers who understand that sitting still for six hours is not a prerequisite for learning. And support in building organization and time management skills.

Environments that are designed for different kinds of minds, not just one narrow way of being. These things exist and they work. The Pelham study showed it. Adults with ADHD tell us that they want it, parents tell us that they want it. But the question is, are we as a society willing to invest in creating these environments? Or is it just easier to prescribe a pill and tell kids that they don't get a voice in the decision? In our final episode, looking at Dr. Barkley's work, we're going to zoom out and ask some bigger questions. We'll look at whether the scary life outcomes that Barkley warns about actually come from the ADHD itself. Or from what happens when kids with ADHD traits grow up in environments that reject and punish them. We'll look at the history of how ADHD became a diagnosis in the first place. And the values that are baked into Barkley's framework that most of us don't think to question. We'll also hear from researcher Andrew Ivan Brown, who has ADHD himself, about a concept he calls misrecognition, which he argues is the biggest harm people with ADHD actually face. I'm looking forward to seeing you there.

Hi, this is Jess from rural East Panama. I'm a Your Parenting Mojo fan and I hope you enjoy this show as much as I do. If you found this episode especially enlightening or useful, you can also donate to help Jen produce more content like this and also save us from those interminable mattress ads. Then you can do that and also subscribe on the link that Jen just mentioned. And don't forget to head to yourparentingmojo.com to record your own message for the show.