Ryan D’Agostino worries ADHD is being over-diagnosed:
Falsely diagnosing a psychiatric disorder in a boy’s developing brain is a terrifying prospect. You don’t have to be a parent to understand that. And yet it apparently happens all the time. “Kids who don’t meet our criteria for our ADHD research studies have the diagnosis—and are being treated for it,” says Dr. Steven Cuffe, chairman of the psychiatry department at the University of Florida College of Medicine, Jacksonville and vice-chair of the child and adolescent psychiatry steering committee for the American Board of Psychiatry and Neurology. The ADHD clinical-practice guidelines published by the American Academy of Pediatrics—the document doctors are supposed to follow when diagnosing a disorder—state only that doctors should determine whether a patient’s symptoms are in line with the definition of ADHD in the DSM. To do this accurately requires days or even weeks of work, including multiple interviews with the child and his parents and reports from teachers, plus significant observation. And yet a 2011 study by the American Academy of Pediatrics found that one third of pediatrician visits last less than ten minutes. (Visits for the specific purpose of a psychosocial evaluation are around twenty minutes.) “A proper, well-done assessment cannot be done in ten or fifteen minutes,” says Ruth Hughes, a psychologist who is the CEO of Children and Adults with ADHD (CHADD), an advocacy group. Only one significant study has ever been done to try to determine how many kids have been misdiagnosed with ADHD, and it was done more than twenty years ago.
A reader writes:
Every time I read an article about over-diagnosis of ADHD, I do a quick scan to see if it mentions girls or women. The Esquire piece mentions the word “girls” exactly twice, but only in the context of little boys, and it has a quote, from a man, about how the “girlification” of the classroom has pathologized boyhood. I think girls and women, whose symptoms are generally less obvious and less disruptive, are under-diagnosed. I was in gifted-and-talented programs, so no one thought to screen me. I didn’t know until I was 25 that there was actually a reason for my chronic disorganization and not just needing to “try harder.” My sixth grade teacher wrote in my yearbook, “I’ve never met anyone who was so disorganized yet so together.” Sure, I could go into a three-hour standardized test and score in the 99th percentile. The bigger challenge was not losing my registration forms or photo ID. Once I graduated from college and had full-time jobs, the administrative tasks overwhelmed me to the point that I feared for my employment – until, hallelujah, I was diagnosed and treated for ADHD. On a related subject, I also learned that women are expected to be able to perform administrative tasks even if it’s not their role, while no one expects it to come naturally for men. Adderall, and much more importantly, the diagnosis of ADHD, changed my life. The excessive focus on the over-diagnosis of ADHD in boys trivializes a problem that can really stunt the life prospects of both girls and adults, and it deepens a harmful stigma that we’ve done nothing to earn.
It’s been known for a long, long time that if girls have ADHD they are more likely to have the inattention form, not the hyperactive, aggressive, disruptive form. Perhaps that difference in how ADHD can look is why the diagnosis is missed in girls. They may be quietly suffering and having trouble in school, but they’re not disruptive. They move on into life, where those inattentive symptoms may reveal themselves as academic and social pressures compound. Now it’s becoming more of an issue. And lastly, we know that women in the United States are increasingly juggling more and more and more. Women still tend to have the majority of the responsibilities at home, particularly when families start up. That elevation of pressure and stress can either produce symptoms like ADHD, or that additional stress can express the underlying ADHD that previously had not been diagnosed.
One female reader’s experience:
I have found ADHD is a misnomer. When I decide to focus, I focus like a laser, be it whatever work I am doing, or subject that intrigues me. But then I cannot focus on much of anything else, just the one thing at hand. For years prior to my diagnosis, my work involved doing a lot of things, all at the same time, with a deadline – media work. I excelled, but burned out more often than my co workers. I was quite good at multitasking, but always felt fractured.
Several readers sound off:
This thread has hit me a little close to home. I was misdiagnosed with ADHD when I was in preschool and was held back a year as a result. Because of the misdiagnosis, I’ve been a year older than most of my peer group for my whole life. My parents sent me to a private Catholic school in suburban Philadelphia that required all of its kindergarteners to undergo a psychiatric screening for learning disabilities. I had previously been in the school’s pre-K program for a year. I remember the screening vividly. I was separated from my mom for what must’ve been a maximum of 10 minutes, and the doctor spoke to me for maybe half of that. He asked if I had a lot of friends, and I excitedly told him I did, and that I had memorized all of their phone numbers. I then went on to tell him each of those phone numbers for a minute or so. Big mistake. It turns out that in the report he filed with the school, and which my mom still has, he indicated that my hyperactivity was potentially indicative of ADHD, and recommended that I repeat pre-K. All based on the phone number recitation. Follow-up was recommended, but luckily my mom never had me go in for any prescriptions. I repeated the year because my parents thought it’d be too disruptive to force me to transfer schools, and the school wouldn’t budge on letting me go through. So I was diagnosed as potentially hyperactive based on a 10-minute conversation with a psychiatrist who was paid on contract by my private school, and my parents were essentially forced to pay another year’s worth of tuition or transfer me to a different school. I’m not saying he probably had an incentive to diagnose kids coming to him from my school, but it certainly worked out for both him and the school. He’d get a lot of potential patients, in addition to whatever contract he had with them, and the school would get a few easy grade-repeaters. I can say comfortably that the only net positive I ever got from the situation was being able to buy beer for my friend when we were sophomores in college. Aside from that, I’ve felt a year behind since I was a toddler, all because of this ridiculous over-diagnosis trend among the white upper class.
A similar story from another reader:
I have a 12-year-old son who is very bright and easily distracted. We have to stay on his butt about getting his homework done and being prepared for school, but we work hard at that, and he has gotten mostly straight-As this year, with no chemical assistance. It could have been a different story. When he was entering third grade, he was assigned a teacher who I had heard wonderful things about, but when I went to parents’ night before school started, she scared the crap out of me. Within the first week of class, I’d already heard from her twice about how my son seemed distracted and had not gotten some assignment done. She treated it like a major crisis, so we set up a meeting with her. She said she’d looked through all his academic records and was surprised to see that he had not had academic problems in the past. She never used the words ADHD, but she strongly implied it. (My son had once had a preschool teacher who had implied something similar.) I freaked out and we took our son to see his pediatrician, who after spending less than five minutes talking to us and to my son, offered to write us a prescription for Ritalin. Just like that. No recommendation for any further analysis or therapy, no discussion of the pros and cons. We said “No thanks.” Over the course of the next few weeks, everything settled down for my son, and by the time of our first parent/teacher conference his teacher seemed almost to have forgotten what she put us through in the first weeks of the school year. I think boys and girls learn differently, and teachers are pressured to fit so much into every school day to keep up with all the standardized tests and so forth that they don’t have time to devote to different learning styles. So a lot of boys are drugged to make the day go more smoothly. It sounds harsh, but I believe it to be true.
A psychologist in training offers a different perspective:
As a third-year doctoral student in counseling psychology, I have some experience with testing for ADHD. I have spent two years working in my campus disability services office with an ADHD caseload, and I spent two semesters actually performing ADHD testing for a local medical school in my city. I realize what you posted was about children, but I think the overprescribing of ADHD meds to children is a symptom of a much larger cultural shift among their parents. I was shocked when I started working at the medical school at how many students came in wanting to be tested for ADHD (and many were seeking meds). These were high-achieving students who had mostly sailed through private high schools and rigorous undergrad programs. A lot of them already had master’s degrees in things like biology and public health, but suddenly when they entered medical school they thought they might have ADHD. Why? Because medical school is hard. It is nearly impossible, and for the first time in many of their lives, they were being challenged. And they had no idea how to do it. So obviously they must have ADHD. My caseload also includes a lot of students who do genuinely have ADHD, and they really, really struggle. If you truly have it, it is going to show up in your life long before you hit college, and it is going to be obvious. Those students deserve our compassion, and the accommodations they seek just to level the playing field. But when I see (mostly privileged) medical students trying to game the system to gain a competitive edge, it makes me furious. But even worse, most of them truly believe they have it! Because suddenly something is difficult for them. This is the generation where everything is supposed to be easy, and if it’s not, there must be a problem.
A clinical psychologist writes:
I work primarily with children and families and I am routinely asked to do ADHD evaluations. Typically big crowds show up in October, after those first parent-teacher conferences, and again in April, as the year winds down and parents panic about their kids’ grades. I have three major points to make: I. ADHD is absolutely over-diagnosed. There are two populations where this happens:
(1) Non-upper-class boys (and a few girls) who display disruptive or aggressive behavior, whose schools go diagnosis-shopping so the kid can be chemically restrained with stimulant drugs. In most cases, the behavior is totally operant: The kid has learned that if he curses, threatens, hits, dances on the furniture, etc., he will be sent out of the classroom and/or out of the school. Mission accomplished! And then people have the balls to tell me that “discipline doesn’t work.” Well, no shit. If you consistently reward a behavior, you get more of it.
2) Upper-class children whose parents go diagnosis-shopping so their kids can get extra services, supports, and stimulant medication to help them study.
II. ADHD is absolutely under-diagnosed. There are two populations where this happens:
1) Girls (and a few boys) who are merely distractible, not hyperactive or impulsive, so they’re not behavior problems. Your daydreamers. Your space cadets. Your absent-minded professors. These kids get called lazy. Unmotivated. Disorganized. Won’t do her homework. Makes simple mistakes; she should know better! She knows what to do, she just doesn’t do it! These kids develop a very negative self-image because they get a lot of negative feedback from their environment. They wind up depressed. I have seen one kid become suicidal because he truly believed he was stupid and would never achieve anything meaningful in life. (The under-diagnosis is more likely when the kid is intelligent and does well on standardized tests. Jimmy is so intelligent, but…)
2) Adults who are older than about 30 and were missed as kids. They (we) grew up before the great over-diagnosis wave, or grew up outside of the urban areas where it was more common. These people tend not to have achieved everything they could have. They tend to have problems in their working life because they forget things, miss details, make simple errors that most people just wouldn’t make. Quite a few develop hobbies or great big life projects that never quite coalesce. Most develop some neat tricks to compensate for their problems with attention, memory, and task completion. Some really believe, after a lifetime of negative feedback from their environment, they are stupid and underachieving. Depression and low self-esteem is fairly common in this group. A few develop anxiety problems because they’re terrified of the constant mistakes they make at work.
III. Your reader who’s a counseling psychology student is full of shit. ADHD and other learning disabilities show up when they show up, when the kid’s compensatory abilities intersect with an environment that’s too demanding for them. That can happen in childhood or it can happen later. The big points where it shows up, in my experience, are in about fourth grade, in the transition to middle or high school, or once in a while in college or beyond.
Another adds, “The fact that a third-year graduate student in psychology can say this is terrifying”:
While I agree that medicating kids who don’t have ADD is a problem, under-diagnosis is as well. I’m a 34-year-old man with ADD (the inattentive form). I was only diagnosed with it 18 months ago, and the first day I took medication was a revelation. I felt more alert and less foggy than I ever had before; the continual slush and confusion that sapped my brain on a daily basis was gone. Why did it take until 32 for me to be diagnosed? Three of the big warning signs for ADD – bad grades in school, trouble holding down a job, and more car accidents – never showed up. The inattentive variety wasn’t well known – Driven to Distraction didn’t even come out until my freshman year in high school. ADD people thrive on structure, so if you’re someone who enjoys school and works hard, it’s possible for you to do well despite ADD. I was a creative person, too (still am) so the ADD behaviors I did have just got written off as spaciness. Unfortunately, as my struggles with my creative work increased, my combined ADD and depression drove me to suicidal thinking, which so alarmed my therapist that she sent me to a talented and sympathetic psychiatrist who, after digging into my life, diagnosed me. (A key “tell” for him: while I like to read, I can’t get through two pages of a book without my brain veering off into some related fantasy.) I am not exaggerating when I say that without this diagnosis and treatment for the disorder, I could be dead.
Another identifies himself as “one of those ‘privileged’ students your psychological doctoral student scoffed at”:
I was diagnosed with ADHD after failing to get my master’s degree for six years. My entire life has been hampered by this problem that no one thought I had because I didn’t fit the typical hyperactive behavior profile. I think back to the times when I was playing outfield, trying desperately to pay attention through an inning and failing. About how I couldn’t excel at a simple manual labor job because I’d “zone out” and slow down. And how I got good (but not great) grades, but it took me about twice as long to finish my assignments as other people. After my diagnosis and a prescription of amphetamine, my life fell into place. I started taking and excelling in advanced mathematics courses I’d been dreaming about for half a decade. Jesus, it even helped my fucking social issues. It was probably the most content I had ever been in my life. But then my doctor left, and a new one took over. He decided I was not ADHD, but was in fact one of those people “gaming the system,” as your psychology student described it. Thus my diagnosis was rescinded. I have never been more furious in my life than when I was sitting in his office, realizing that he didn’t give a shit what I said; he’d already decided I was a fraud, and the appointment amounted to Kabuki theatre. The fallout was pretty epic. I could barely keep up with my next semester’s workload, and to this day (over a year later) I’m not functioning at the level I was before stimulants. I lost my research position due to inability to work. Now I have no funding, even without taking courses or working I cannot make inroads with my thesis, and I’m realizing that without stimulants I will never excel in my chosen career of engineering. Since this is the United States, I can’t afford to see doctors independent of the university system, so I live in a state of perpetual impasse: my choice is to either be effectively owned by the psychiatric system for the rest of my life, or walk away from the career I’ve been building for most of my life. I have no money, no job, no future, and no hope.
Another round of emails, which get more and more nuanced:
Thank you so much for featuring this discussion about ADHD. It has been wonderful reading the experiences of others in similar circumstances and I’ve taken away a real sense of solidarity from your other readers who have written in. I was diagnosed with ADHD inattentive type last year. I had never been diagnosed before, because I did well in school and went to an elite university (although, tellingly, I was a mediocre standardized test taker). Upon graduating from school and entering the workforce, I collapsed. I didn’t have the structure of academics to keep me in check and I flubbed it. For several years I was stuck in the entry level, totally flummoxed at the apparently effortless advancement of my peers while I was spinning my wheels. I became depressed and indifferent, and I withdrew from any hope of a real and meaningful career. For several years I was treated with antidepressants and anti-anxiety medication, which did eventually help the depression and enabled me to do enough to get a foot in the door at my dream job. The efficacy of the antidepressants promptly waned; I was mortified at the prospect of blowing what I felt was my last real chance to start a proper career. In one session with my psychiatrist, I related the power this profound fear of failure had over my internal monologue and how I couldn’t tune it out (amplified by the persistent presence of very talented and pedigreed professionals several years my junior). It was suggested that the depressive issues were caused by attention problems, and I was prescribed an amphetamine-based psychostimulant regime. It was like turning on a light switch. I feel good about myself for the first time in a long time, and I feel like I can finally get on with my life instead of gazing at my navel and wondering why I can’t make it work. I’ve been promoted, twice, in the time since my diagnosis. To this day, I’m still drunk on the sensation of possibility. Despite this, every time I go to the pharmacy I’m given looks like I’m a faker who’s chomping pills to get ahead. Persistent over-diagnosis for troublemakers in middle school and casual pill-sharing in college has undermined the notion that ADHD is a legitimate problem. I’m infuriated when I see authors asserting that it’s not a thing, and that if I were only diligent enough to eat well, exercise, and sleep properly that all of my problems would be solved.
Another argues that “drugs are helpful, but even just the knowledge that you have an ADHD brain can be empowering”:
I’m in the under-diagnosed population of non-hyper girls who did phenomenally on tests. I did well in school even though I would procrastinate and lose my homework before I could turn it in. My struggles really began after law school when I was unable to perform the many administrative tasks and planning duties necessary to be a good junior attorney. I could understand complicated legal issues, but I’d forget to book a court reporter for a deposition or even forget the deadline to file a motion. I wasn’t even learning from my mistakes, forgetting once again to book a court reporter on the same case. My diagnosis of ADHD was a breakthrough. The knowledge that I just wasn’t good at certain things, like organization, planning ahead, time management, and other things that some people take for granted, was a great relief. I read Delivered From Distraction and learned strategies to help me function better. Knowing how my brain works, along with methylphenidate, has helped me compensate for my tendencies.
Another blurs the line between needing and wanting:
The issue of under- and over-prescription of stimulant drugs has two main problems which cause the controversy. First, ADHD, like most psychiatric illnesses, falls along a continuum. Second, the stimulant drugs are effective for increasing focus in everyone. The result is you have a large number of people who are right along the line between really needing the treatment and being able to get by without it, and a huge number of other people who would like to use it anyway. My personal perspective is as a final-year medical student who has gotten through without using these drugs. I am also one of those people who falls along the borderline. Could I have gotten a prescription? Absolutely! My parents even mentioned that a few teachers brought up the possibility while I was in grade school, though my physician father disagreed and no action was ever taken. I have actually been driving one of the medical tutors at school a little crazy this year because I have difficulty sitting still when nothing is happening, and he seems to think I have ADHD. However, I function pretty well, and it hasn’t caused any problems which I couldn’t overcome. Would being diagnosed and getting a prescription make work easier? Yeah, almost undoubtedly. Am I going to get one? No, I don’t think the side effects are worth it. Of course, if their use became incredibly widespread and I found I was at a significant competitive disadvantage by not using them … well … that might be a discussion for another day.
Another wants it now:
I think that all this discussion about how many people really have ADD or ADHD misses the point. The real question is: How many people could benefit from regular or occasional use of ADD meds? If I’m an adult who doesn’t have ADD, but I’m 40-percent more productive on a day when I take Adderall, why shouldn’t I be allowed to make that choice when I’m behind on work?
A reader writes, “I figured I’d chime in on the ADHD thread, since there’s still apparently one voice missing: someone who was diagnosed as a child”:
That’d be me. At the age of six, in my second marking period in first grade, I was diagnosed with ADHD. Though my memory is hazy of that time, what I recall is being inattentive in class and extremely disruptive. I remember one time being at a hospital for something unrelated, and they put me in a straitjacket to calm me down. I can’t emphasize enough how hyper I acted as a child, and how quickly that changed when I began to take Ritalin. Quarterly report cards in my school district would give you a checkmark for everything you weren’t doing well in (ability to work with others, self-control, etc.), and after one full marking period with the help of Ritalin, I went from having every box checked to only two. I will never forget the pride I felt then. My adolescence, life, and identity were very much entwined with ADHD. But my academic and social life settled down significantly when I started taking meds. I was a very good student, usually in the advanced classes. The pills gave me the ability to focus on the school work, and I know I could not have calmed down without them. Everything else, from Little League to karate, was easier with the pill. Days I forgot it were long and tedious. As I began dating my now-wife, we talked about going off the drug. Those conversations were driven by my primary care doctor suggesting it (fearing the effects of 20 years of daily amphetamine intake at a level of anywhere from 10 milligrams to 54 milligrams!), as well as my wife getting her master’s degree in education, where she gained academic insight into ADHD. (She was shocked, for example, that I was merely prescribed medication but never forced to have therapy or visit a psychologist, something she claimed is mandatory for people diagnosed nowadays, though your thread seems to imply otherwise). While my energy level initially fell, I have found that coffee does a pretty good job of compensating for the lack of stimulant in me. I now realize the pill also was the deciding factor in my day-to-day life. On days I felt sick in the morning, I could take the pill and feel better. I could eat shit food that should have knocked me out and brought down my energy (so many carbs!), but the pill overruled it. Since then, I have a much better diet, and when I get sick, I actually need to take a day off to rest before I feel better. These things are new to me in my life as of my mid-20s. The ADHD is still certainly there. Little things still manifest. When I write a song with my band, I’ll write most of the song, but eventually I trail off. It’s mentally finished for me before I actually finish. I’ve noticed this my entire life. Still, being off the pill, I’m more even-mannered than ever before. Though the ADHD seems to act up a little late at night, I’m mostly pretty-even throughout the day. Being well-fed certainly helps, and I can definitely concentrate best right after some food or caffeine. But maybe that’s the same for everyone, not just those of us with ADHD. I’m very happy being off the pill now, for sure, and this thread has been a great read.
Update from a reader:
I’m the college student with ADD who wrote in a few years ago about using pot to even out the effects of my ADD medication. You put my email in The Cannabis Closet, which was great, but also eternally mortifying because I used the word “coeds” for some Adderall-induced reason. Yikes.
Anyway, I thought I’d chime in to help flesh out the topic. I was diagnosed in the 5th grade, after my exasperated neurologist dad was complaining to a coworker about all the troubles I’d been having in school. His coworker happened to be another neurologist specializing in ADHD and one of the leading researchers on the disorder in the country, and she told him that my behavior matched almost exactly. That’s when I started getting to visit my dad at work during the week, taking a battery of tests.
The most memorable test involved a box with one large button and an LED screen that flashed numbers. The doctor would give me a series of instructions about when to push the button (always on a 9, when the same number happened twice in a row, when a 5 came after a 6, things like that) and then leave me to do the test on a table full of puzzles, toys and games. My dad still likes telling the story about driving me home after the first one and I could describe every toy in detail but couldn’t remember the rules of the test.
After trying these tests under a bunch of different medications, I was only then officially diagnosed with ADD without hyperactivity, and began seeing a psychiatrist once a month to help me not only manage my medication, but also to teach me the tools to adapt to my disorder, to figure out how to take something that can be debilitating and turn it into a benefit. Without those developed skills, I’m not sure I would’ve even graduated high school, much less college. I’ve been on and off my medication since then depending on my life circumstances. My experience, however, gives me two takeaways:
1) My experience with medication was largely positive, but only in the long run. I went through several medications as I grew up, and found types and amounts that worked for me through a close working relationship with my psychiatrist. There were periods where I felt like a hollowed-out zombie, where I didn’t eat or sleep, where I got into fights at school all because of the meds. The idea that kids now are just being given prescriptions without any accompanying therapy is shocking. Medication is an an effective tool, but only when used correctly.
2) I’m currently unable to get any medication at all. My psychiatrist retired, and it’s been impossible to find another psychiatrist who is willing to prescribe me Adderall. Doctors are so worried about people who don’t have ADD using it or selling it that I come across as exhibiting drug-seeking behavior. All I need is someone who can give me the prescription I need, occasionally consulting and checking in to see if any adjustments have to be made. I’m fine for now, my current job doesn’t require that I be medicated, but I want to go back to school, and even the application process feels impossible without meds. I’m not sure what I’ll do. Drug dealers don’t take my insurance.
The issue is so complicated. There are too many drugs floating around, but not enough of them are getting to the people who need them.
A reader wraps up the popular thread:
It’s remarkable how to me how much of the ADHD discussion has focused on people who seem to have been, even before diagnosis and medication, abnormally high achievers: elite college graduates, law school graduates, medical students.
But only about a third of this country attains the level of a bachelor’s degree. I think a large part of people’s knee-jerk skepticism about ADHD stems from the fact that, at least anecdotally, this condition seems to disproportionately afflict people at or near the top of the income/education distribution. I don’t doubt the sincerity of your readers who describe what a life-changing experience it was to start taking amphetamines, and I’m sure their diagnoses have allowed them to thrive in the rarefied ranks of fast-paced, high-pressure fields like law and medicine. But it’s the preponderance of ADHD cases among exactly those kinds of people that causes the suspicious looks from the pharmacists and the eye rolls from people like me.
Is it not worth considering the possibility that the pressures and expectations of modern-day elite occupations are, for lack of a better word, insane? That the person who can simultaneously excel and be happy under the typical demands of, say, a medical resident or first-year law associate is a very rare psychological outlier? My sense is that the strong feelings some people have about the (over)diagnosis of ADHD has to do with the fear that we’re trying to medicate our way out of an existential crisis: most people were simply not designed to thrive under the conditions that society holds up as the very height of achievement.