The Lens of Self-Regulation
I interview Dr. Neal Rojas about ADHD.
“I hope that our society does get there and does start to look at things through that lens, since that would be a more empathetic society regarding people who have ADHD and also a society based on a recognition that success isn’t about knowledge or intelligence so much as self-regulation, social performance, and applying knowledge in the moment.”
Dr. Neal Rojas is a developmental-behavioral pediatrician at UCSF Benioff Children’s Hospital who specializes in diagnosing and caring for children who have conditions—including ADHD and autism—that interfere with learning. His research focuses on patient-centered care and on medical education.
I found out about Dr. Rojas through the below YouTube video—about ADHD—that has over 200,000 views. I recommend that everyone check out the video:
It’s an excellent and informative video.
And in addition to the video, make sure to check out my 1 January 2022 piece, which provides some useful context about my own perspective on ADHD.
Keep in mind that you should question everything in psychiatry—just like in other domains—since there are a lot of things to challenge and look into and explore. I have some psychiatry interviews in the works on topics like (1) diagnosis, (2) differential diagnosis, (3) how effective ADHD medications truly are, and (4) how effective psychiatric medications in general truly are.
I was honored and thrilled to be able to ask Dr. Rojas some questions about ADHD—see below my interview with him that I edited for flow and added hyperlinks to.
1) What are the most exciting projects that you’re currently working on? And the most exciting projects that you know of that others are working on?
One of my colleagues is part of a project that effectively teaches primary care doctors who work with children about all of the basics of behavioral medicine and of ADHD in particular. And I’m helping to shape that curriculum—these doctors have finished their training but we’re helping them recognize how important mental health is in children.
As for what others are doing, there are so many different projects in the academic environment—I’d be loath to say that one was more exciting than another.
But one very big thing is that we’re going to have a separate amazing facility at UCSF—thanks to a very generous family—that will allow us to actually house researchers, child psychiatrists, and developmental-behavioral pediatricians like myself in the same place. And basically allow us to get everyone to pull in the same direction on moving things forward from a research and clinical perspective regarding children—and families—with behavioral health conditions.
2) What do you think about the “controversy” where people differ on whether ADHD constitutes an impairment? Russell Barkley has expressed a strong opinion that there’s nothing good about ADHD. And that people might have various wonderful strengths but that those strengths exist independent of and in spite of ADHD and not in any way as a result of ADHD. But there’s a 2021 interview where Barkley does mention that a narrow subset of ADHD sufferers are an exception and do actually have some advantage on account of having ADHD—the issue of course is what precisely “ADHD” is and isn’t and whether the relationship between ADHD and the advantage in question is actual legitimate genuine causation as opposed to just correlation.
There’s no strong literature showing that ADHD causes any benefits.
But you might point out that there’s a bias where researchers aren’t paid to search for a condition’s benefits as opposed to its harms.
3) What do you make of Barkley’s point that saying that ADHD confers some benefit on people not only is scientifically inaccurate but is also—to the extent that we need society to help these people and not regard them merely as different or even as gifted—harmful and counterproductive?
I think that that’s a very binary way of thinking about things—my clinical experience is that children are more likely to work harder on their challenges and deficits if they feel valued instead of feeling like they’re a burden.
4) Why can’t you just simply say “There’s nothing at all good about ADHD, but ADHD doesn’t in any way somehow define you, since it’s merely one single narrow particular aspect and component of who you are as a human being who has all sorts of different traits and strengths and weaknesses”? It’s like diabetes—you don’t say that diabetes is somehow anything other than a bad thing, but you also make it clear that diabetes doesn’t in any way somehow define a kid who just happens to have diabetes.
I think that that resonates if you’re an adult or young adult.
But if you’re a seven-year-old and you’re looking around and all of the other kids are doing their homework faster and you’re the only kid the teacher and coach are yelling at, then that’s your whole experience of the world. So it’s pretty important to be able to combat the harmful notion that this kid is different in a bad way when they’re not behaving at school or doing well academically and when it’s causing a lot of pain for this kid’s parents.
5) To what extent is there a campaign to do away with the term “ADHD” and replace it with something better? I feel that the term “ADHD” has ruined a lot of people’s lives and done extraordinary damage, since people get diagnosed at age 30 instead of age 8 because of this silly and inaccurate and misleading term—my understanding is that the “A” and the “H” in the term are both harmful. I also wonder whether the term “autism” is harmful and counterproductive and causes people to get diagnosed with autism at age 30 instead of age 8, but that’s obviously a whole different topic.
Unfortunately, nomenclature in medicine moves at glacial speed—it’s so slow. And frankly, the term for the condition 30 or 40 years ago was “lazy” or “stupid” or “obstinate”, so just having any medical term at all for this condition is a big improvement over that previous situation.
It would be nice to have a more accurate name for this condition, but the unfortunate reality is that I don’t see that happening anytime soon.
And there’s definitely a phenomenon where the kids who have ADHD and happen to act out a lot will get identified sooner, whereas the kids who have ADHD and cause less disruption will often—tragically—only get diagnosed in their 30s or 40s.
Not getting diagnosed doesn’t always cause the same level of tragedy, of course—someone who wasn’t diagnosed and therefore didn’t perform as well in their career as they might have isn’t in the same situation as someone who wasn’t diagnosed and therefore lost their marriage or job or ended up in a car accident or in prison.
6) The other issue is that the term “ADHD” trivializes a very profound condition and makes it sound like something minor that you could resolve with some coffee or something—it’s an extremely impairing and serious disorder and it should have a heavy-sounding name to reflect that reality.
7) How many undiagnosed ADHD sufferers are running around out there? Do we have any sense of that?
It ranges from 5–10% if you look at the studies that estimate ADHD’s prevalence. But there’s a substantial amount of both overdiagnosis and underdiagnosis within different communities.
It’s very hard to figure out how much ADHD there really is out there because someone might get a bunch of labels applied to them and then later find out that some of those labels were wrong—or maybe they had certain symptoms but outgrew them. And of course you can have comorbid conditions alongside ADHD—it can be hard to tease apart these conditions and draw boundaries.
There’s a lot of misdiagnosis and late diagnosis. And whether you get diagnosed accurately and early depends a lot on where you grew up, how many specialists there were in your community, and how privileged your family is.
There’s certainly a lot of undiagnosed ADHD out there, though.
8) Are there millions of people running around out there with undiagnosed ADHD?
9) And would changing the name help reduce the amount of undiagnosed ADHD?
Things will change slowly.
But it’s true that if we create more awareness and understanding then people will filter into our less-than-perfect health care system—and our far-less-than-perfect behavioral health care system—sooner and faster.
One issue is that a self-regulation deficit will manifest differently in different contexts—someone who has ADHD might be seen as having a mood disorder before they enter school, be seen as having ADHD while failing to function well in the classroom, and be seen to have autism when failing to function well socially with peers. And it’s of course possible to actually genuinely have a mood disorder, ADHD, and autism at the same time.
It’s very common for a young kid with ADHD to get misdiagnosed with autism. And then the kid will get older and develop more language and it’ll become clear that actually they’re struggling socially as a result of ADHD and not as a result of autism.
10) Am I correct in thinking that soon it’ll be totally normal to talk about mental-health issues? Maybe my view on this sounds overly optimistic, but I think that the stigma is really evaporating, since younger people seem to lack the old-fashioned attitudes that older people have.
I really hope that the stigma will continue to be minimized and that brain conditions will be seen more and more in the exact same light that we view diabetes—we don’t shame or get angry at a diabetic and hopefully we eventually won’t shame or get angry at kids who have ADHD either.
11) I’ve tried countless times to explain the concept of self-regulation to people—people either don’t get what you’re saying or else they think that it’s a perverse and disgusting excuse for awful behavior that you’ve engaged in. I wonder about the deeper philosophical issue of human responsibility that comes up regarding ADHD and also about how this is playing out in the legal system.
I myself don’t get involved in court cases as a matter of practice. But patients ask me all the time whether something that their adolescent did was ADHD-related—the answer is very often “Yes”, of course.
This is a huge ethical issue in jurisprudence and medicine—to what extent can we invoke the proverbial “Twinkie defense” that came up in the Dan White case? Where’s the line between the “Twinkie defense” and having a brain tumor that clearly affects your brain in a way that’s relevant to something illegal that you did that you’re on trial for?
Suppose that an adolescent who has ADHD gets a ticket because they were talking to their friend while driving—does this adolescent actually deserve the consequences associated with that ticket? And what if that ticket causes them to seek a higher level of care that will get them what they need to be a safer driver?
These are similar questions to the ones that the seizure specialist gets asked regarding the issue of whether a given patient has been seizure-free long enough to be safe behind the wheel—you have to go case by case with these things and look at the circumstances.
12) When I was a kid there was a kid in our school who we’d make fun of because he had ADHD—the irony is absolutely incredible, since I myself had massive undiagnosed ADHD. And one day we told him to pick up a log and throw it through a window and he actually did it, and the cops had to talk to us, and I just know with 100% certainty that there’s no way that he ever would’ve done that act of vandalism but for his self-regulation impairment.
Many kids who have a self-regulation impairment are striving to connect socially and be accepted.
And they’re often the ones who get caught red-handed—that’s just the way it works. Everyone else in the group of kids can be throwing rocks but the kid who has ADHD will often be the one holding the rock right when the proverbial cops pull up.
Kids with a self-regulation impairment are often bad liars too, which causes them to get caught even though they weren’t doing anything that the other kids weren’t also doing.
Keep in mind also that it was well established in your group of friends that if you told this kid who you’re talking about to do something outlandish then he’d probably do it—kids will discover that a kid with ADHD is willing to do anything and then kids will ask the kid with ADHD to do all sorts of things that will get the kid with ADHD in trouble.
In the case of this kid who you’re talking about, it was absolutely causal that his self-regulation impairment resulted in him committing that act of vandalism—that was causal.
13) What percentage of the prison population has ADHD? Poor impulse control must of course result in a lot of criminality.
I don’t have the numbers at my fingertips. But I’d hazard a guess that people with ADHD end up incarcerated at twice the rate of the regular population.
It’s of course not an accident that this happens—having worked with kids who have ADHD, it’s tragic to hear their life stories, since these are the kids like the kid who you just told me about who threw that log through that window. Many of these kids just want to be accepted—the guys in the crew or in the gang tell them “Hey, we need you to carry this in your backpack for us” and then they get caught.
14) I know someone who got diagnosed with ADHD pretty late—at like 25—and what struck me about her is that she’d managed to make it through university and hold down a job. So I had this realization that inquiring about someone’s education and employment really isn’t enough to informally and casually screen for ADHD—the tragedy is that people get diagnosed super late because they don’t fail out of school or get fired from their job. You have to really probe deep and find out what their deal is in terms of self-regulation—you can’t have this very silly superficial view that I used to have where I thought that people who are able to make it through university and hold down a job somehow must not have ADHD.
There are multiple ways that a self-regulation impairment can be masked. One issue is that you have to look at the actual demands that were placed on an individual in school and the actual demands that are being placed on an individual in their job—you can’t just say that they “got through school” and “are holding down a job”, since there’s huge variation in terms of what those things mean demand-wise.
And another issue is that people who have ADHD are sometimes able to find a really good support network—both in the workplace and outside the workplace—of people who are empathetic and nonjudgmental but who hold them accountable. There’s a saying that the two most important decisions a person with ADHD will make is who they marry and who they work with—that support network is really crucial.
15) Everyone’s familiar with the construct of “intelligence”—as vague as that construct obviously is. But I see the world through the lens of self-regulation—will we reach a point in society where everyone sees people through the lens of self-regulation and talks about people in terms of self-regulation? We say “I met this person the other day who was really intelligent” but we don’t say “I met this person the other day who had fantastic self-regulation”.
I think that people will often attribute high productivity to brilliance and intelligence when it actually should be attributed to good self-regulation instead.
We do talk about people being “smooth” socially or about people being dependable or about people being “on the ball”—we indirectly talk about people’s level of self-regulation even if our society doesn’t yet look at things through the lens that you’re talking about.
I hope that our society does get there and does start to look at things through that lens, since that would be a more empathetic society regarding people who have ADHD and also a society based on a recognition that success isn’t about knowledge or intelligence so much as self-regulation, social performance, and applying knowledge in the moment.
16) The profound irony is that I judge others for their awful behaviors even when I know full well that I myself shouldn’t be judged for my own awful behaviors. And it’s not even impossible that these people I’m judging have ADHD themselves.
It’s human to judge.
But awareness and understanding can help us overcome that instinct to judge other people’s behaviors.