Interview with Alan Schwarz, Author of ADHD Nation: Children, Doctors, Big Pharma, and the Making of an American Epidemic
Alan Schwarz, a Pulitzer-prize nominated journalist, noted for his groundbreaking work at the New York Times, discusses his new book ADHD NATION.
He provides concrete evidence that although ADHD exists, the syndrome has been widely misdiagnosed. Millions of children in the United States have been diagnosed although they may not have ADHD.
Who benefits? Did your child get a proper diagnosis? Parents, educators and health care professionals need to read this interview and get a copy of Alan’s book.
Interview with Alan Schwarz
What was the impetus for the book?
“I had been the guy at the New York Times who had written more than 100 articles exposing the dangers of concussions in the National Football League and in all professional sports. After having done that through 2010 and half of 2011, it had been about four years, I wanted to do something else…
One of the things that really caught my eye and ear was when I heard that there were high school kids in high-pressure academic settings who were snorting Adderall before the SATs. I looked into it and it’s not like it’s happening in every high school every day but it is happening more and more. I saw it as merely an academic pressure story. I didn’t have any particular interest in ADHD or for that matter, Adderall and its stimulant brethren. I just wanted to do a story on how kids were feeling so much pressure to perform that they were doing this.
I did that first story and I thought it was just going to be one, but it was so clear as I looked into how the kids got the medications illicitly, that the system through which ADHD was being diagnosed and then prescribed for, was really not functioning properly by a longshot – and the people who were so-called experts in charge of it were denying that there were any problems at all.
It was so clear that there were problems that you look deeper, and you find more systemic issues than you’d thought you’d find.”
Do you believe that ADHD exists?
“Of course! The first line of the book is ‘ADHD is real’! I think that it’s pretty clear where I stand on this. ADHD can exist as a medical construct designed to help people who struggle in life, without being misdiagnosed in millions of children beyond the ones who truly fit the definition. You can have a functioning, legitimate, good-faith system, however imperfect, while not going so far as to tell millions of kids ‘There’s something wrong with your brain’ when there isn’t.”
Why are kids getting diagnosed and why are the numbers increasing?
“There are a lot of reasons kids get diagnosed with ADHD. The primary reason that kids get evaluated is that the adults around them really want them to succeed and not struggle. And kids who are having a terrible time in school with sitting still or paying attention, parents and the teachers say, ‘We wanna help this kid.’ And a relatively easy way to help them is to say ‘Well, maybe he has ADHD – let’s try some Adderall and see if it helps.’ Well, it’s gonna help anybody. It helps almost all people focus and be less distracted, ADHD or not.
So when the kids improve on it, they say ‘Well, he must have had ADHD.’ That’s not how it works. You might as well put platform shoes on the kid and say ‘Well gee, he got taller! He must have been short in the first place.’ It doesn’t make any sense. You have to really investigate what’s going on with the kid: Why are these behaviors so prominent? Could it be that he’s not getting enough sleep? Is an anxiety issue, or has there been a lot of discord or trauma in the home that can lead to a kid acting out or being very distractible? Bad diet?
I’m not minimizing ADHD when I say that there are other things that cause ADHD behaviors that are supposed to be investigated and ruled out first before any diagnosis is made. Unfortunately, we’re skipping a lot of those steps and going straight to this diagnosis and then usually the prescription, when that is not necessarily the appropriate or advisable path to take to help the kid.”
The diagnosis isn’t usually too intensive. It’s based on some comments by a teacher or a visit to a doctor…
“There are some incredibly well-done, thoughtful diagnoses, and there are some that are absolutely ridiculously off-the-cuff. And there’s a lot in between. It depends on how much knowledge the doctor, sometimes the parent, has about the disorder and the diagnosis, what meds are designed to do, supposed to do.
Sometimes, unfortunately, it has to do with how much time everybody has. If they don’t feel like spending five sessions over three or four weeks really doing the proper job, they say ‘Look, screw it Doc, fine – maybe it’s ADHD, I have to get out of here. I have to pick up my other kid.’ I’m not saying that most parents are like that, but clearly, expedience is something that we value in our society and often demand, and becomes a detriment to other things.
So, you’re left with a system with a quick diagnosis and prescription — which can be something that appears to work well. Unfortunately, it can mask what the problems really are with the kid and not give them the help that they need.”
Based on one of your older articles, you said that pharmaceutical companies had gone on a marketing campaign. A few years ago the medical field changed the name from ADD to ADHD. Is this a part of the initiative to sell more medication?
“No, I don’t think that change had anything to do with it. ADD, when that name was adopted in 1980, replacing what was then called Minimal Brain Dysfunction, that rebranding of the disorder was done to get parents and doctors more comfortable with the diagnosis – and to recognize that inattention was a key component. They’ve sort of been sticking hyperactivity in and out of the name ever since 1980, but that’s more just trying to figure out, ‘Is hyperactivity a key part of the syndrome? But what about the kids who aren’t hyperactive, how do we get them involved and treated?’ So the name since 1980 is more just a clumsy handling of the hyperactivity issue.”
Chapter 9 of your book is titled THERE’S SOMETHING THEY KNOW ABOUT US. What will readers find in that chapter?
“That’s the chapter that really deals with how the pharmaceutical industry tried to attract parents and the public to the diagnosis and the prescriptions. They really did do a masterful job in getting parents to think their kids had ADHD and that these drugs were something they wanted to try.
Of course in some cases, it really did work out very nicely. But the pharmaceutical companies grossly misrepresented what the disorder was and what the medications were for and what the medications did. They exaggerated the benefits of the medications, completely minimized the risks associated with them – particularly stimulants and other Class 2 controlled substances. Very serious medications, they need to be handled carefully, and they were marketed as virtual tic-tacs.
The reason that the chapter title is THERE’S SOMETHING THAT THEY KNOW ABOUT US, is because the pharmaceutical companies aren’t stupid. They marketed this in a way that they know would resonate with mothers and it worked brilliantly.”
In what ways were they specifically targeting mothers?
“Mothers generally deal with their child’s hyperactivity and attention issues more than the fathers. They are, in general, the ones who interface with the teachers, and the ones who are dealing with the kids at home and shuttling them to and from and getting them dressed. I don’t want to sound sexist, but that’s generally how it works.
One of the ads for Adderall had a mother playing with her son – both sort of smiling and just absolutely delighted with each other. The headline says ‘Thanks to Adderall … ‘ and then the mother says ‘Good job on your homework! Thanks for taking out the garbage.’ As if, give your kid Adderall and he’ll finally do his chores.
There is a shred of plausibility in that. If the kid is going to stop bouncing around and attend to the things he’s supposed to be attending to more, whether it is homework or getting dressed, yeah, maybe he’ll take out the garbage more – but that is a grotesque misrepresentation of what the medications are supposed to be prescribed for.
They’re not prescribed to make the parents’ life easier. They are supposed to be prescribed to deal with what is roundly described as a very serious disorder that can impair your life, your education, your home life, your future work and relationship life. You shouldn’t basically give your kid this pill so they’ll take out the garbage.
You mentioned the medications and their side effects…
“It’s been known for a long time that the two classes of stimulant medication – amphetamine, which is essentially Adderall and Vyvanse, and methylphenidate, which is really Ritalin and Concerta – are very similar. They have powerful effects on the human brain, depending on the dose of course.
That doesn’t mean they’re the devil’s work. But in addition to helping human beings concentrate, they will also curb your appetite in a significant way – most people, not all. They can cause insomnia. There are some other side effects that are considerably more rare and also considerably more serious. Some people will hallucinate, even when they use them properly; one in every five hundred kids in many of the clinical trials, in the 90s and 2000s, experienced hallucinations, seeing things that aren’t there. These are things that people need to look out for.
Particularly the addictive nature of the drugs among adolescents and young adults. I don’t think we should be worried about an eight-year-old becoming addicted to Adderall, because the parent is going to administer it properly and hopefully keep it in a locked box. When you start having 16 and 17-year-olds carrying the prescriptions around or having access to them themselves, and they can take more than one dose because they feel like staying up all night to study or party – you start getting into the real dangers of addiction.”
You say in the book that a lot of parents get diagnosed along with their kids right?
“The work that has been done looking at what extent ADHD is genetically transmitted has been used for two things. One, to help legitimately understand and treat patients, which is great. But also, merely to just diagnose more adults.
Generally what happens is the child shows the behaviors because they’re obvious and troublesome. The kids get diagnosed and the doctor will say, ‘A.D.H.D. is highly inheritable. Have you had you had any problems with this too?’ The diagnosis tends to go upstream. You see the entire field embracing the idea that if the kid has it, then the parents could very well have it too. While I guess that’s true, unfortunately, what you see is that dynamic get leveraged so strongly that it reifies the presence of the disorder in both the child and parent at the same time. ‘The kid has attention problems, I’ve had attention problems, we must all have ADHD.’ That’s preposterous. Lots of parents and children share different traits and behaviors that are derived from things other than congenital brain disorders.
If there is a genetic component to all of this, and it certainly appears that there is, that mere fact should not greenlight the knee-jerk diagnosis of ADHD in relatives who have attention issues. That’s where my concern lies – it’s not whether the genetic link is true, it’s how we use it in handling real-life diagnostic settings.”
Based on your research, has the misdiagnosis contributed towards low self-esteem?
‘I think that there has been painfully little research in the cost of a misdiagnosis of ADHD. So much attention, and understandably so, has gone towards the benefits of a proper diagnosis, which are undeniable. But so much attention has gone to that, that we’ve lost sight of the costs of over-enthusiasm for the diagnosis.
No – there are no studies of what happens to kids who have been diagnosed incorrectly, largely because there’s no way to go back and determine that the diagnosis was indeed incorrect and then trace everything from there.
And you can’t do a controlled, randomized trial where you make the proper diagnosis in some and then misdiagnose others and see what happens. You can’t in good conscience tell a child you have a behavioral disorder and treat them with stimulants, when you know they don’t have the disorder in the first place. It’s impossible.
What I fear is that the lack of studies on this phenomenon has allowed people to think that it doesn’t exist. We will never have a controlled trial on it, but that doesn’t mean we shouldn’t care and we shouldn’t try and do better.
Anyone who denies that there are countless kids who’ve been misdiagnosed with ADHD doesn’t know arithmetic. This is not a matter of opinion. The American Psychiatric Association, in its official definition of ADHD – where all of the experts have gotten together for years and years and deliberated ‘what are the symptoms, what are the constructs, where does it come from,’ they go into the four or five page definition in the DSM – they also say as part of the official definition that about 5% of kids are affected by the disorder. That’s what the consensus of the experts is. I will accept that on faith. Then why are we diagnosing 15% of children?
The CDC’s very well handled and validated work on this subject indicates that 15% of children, one if five boys nationwide, get diagnosed with ADHD. I’m not the one who is saying that there’s a misdiagnosis problem. It’s 15 being three times 5 that is saying there’s a misdiagnosis problem.
These are people for years went completely berserk when people would accuse ADHD of not existing. They would go completely insane. I understand that. Well now, these are the people saying the misdiagnosis doesn’t exist. And that’s just as insane. It’s matter of pure arithmetic.
Now, let’s not get too drunk on the 5% figure. We can live with 7 or 8 – it’s an imperfect system, people are doing their best, we understand why there are going to be more kids diagnosed than perhaps there should be. We live in the real world. Let’s just accept 7 or 8 (percent). We’re still diagnosing millions of kids more than we should. Who’s going to care about them? No one is ever doing studies on them because it would never work. You can’t do a study on them. But that doesn’t mean you can’t care or can’t try to minimize the mistakes. I get somewhere in between baffled and furious at the institutional refusal to look into that.”
Do you recommend that parents have a second diagnosis? Or get their kids reevaluated?
“I think everyone needs to slow down. Parents care so much about their kids. Parents aren’t doing this on purpose. They go to the doctor and the doctor says ‘Hey, your kid might have ADHD, let’s try Adderall and see what happens.’ The parents are like, ‘OK, I know a couple of other parents whose kids benefitted from the drugs and so, yeah, I guess so Doc.’
Sometimes it gets handled with more care than that and that’s wonderful. But a lot of time it doesn’t, and the parents need to be less reflexively accepting of what is a very serious diagnosis. The doctors need to slow down, even if their insurance company doesn’t reimburse them that much for doing the proper three, four, five session diagnostic procedure.
Do it anyway! If it’s important enough to diagnose the right kids, it’s important enough to not diagnose the wrong ones.
Has there been any attempt at creating a standardized or nationally recognized evaluation to get an accurate diagnosis?
“There’s always been an attempt to, if not standardize, at least objectify the behaviors that we’re talking about, and how severe they need to be in order to qualify for a diagnosis – how to get as objective impressions as possible from parents and the teachers who know the child and have witnessed the child the most.
You’re seeing these questionnaires or symptom checklists… Unfortunately, that approach has evolved to where they’re not just using symptom scales to just get a better idea of what’s going on with the kid, they’re asking as few as six questions and if the answers fit, Boom! ‘You probably have ADHD.’
Researchers are trying and have tried for a long time to locate some sort of physical or chemical issue in the brain that is detectable through an FMRI or MRI or any sort of brain imagery, so that we can just point to a picture and say, ‘Yep, there it is.’ But we are not there yet. And so, while that work continues, we’re stuck with what remains this subjective process. It doesn’t mean it’s inherently bad. Just because there’s not a blood test for anxiety doesn’t mean you let someone suffer with severe anxiety. There’s no objective test for a concussion either. That doesn’t make it any less real. You just do your best to diagnose and handle it properly.”
Your book, ADHD NATION, who is the target or the focus? Who needs to read this book?
“I think it’s parents more than anybody else. Because they’re the ones who care so much about their children and want the best for them. Sometimes it’s an ADHD diagnosis and medication. Sometimes it’s avoiding an ADHD misdiagnosis and medication, and making sure that the child’s real underlying issues are identified and treated well.
Most parents at some point will think, ‘I wonder if Todd has ADHD’ or they will be told by somebody else, maybe a teacher, ‘Hey you might want to get your kid evaluated for ADHD’. Parents need to be armed with better information to navigate what happens after that.”
For more information about Alan Schwarz’ book ADHD Nation and to purchase a copy visit: adhdnationbook.com
The @nytimes calls ADHD Nation "required reading." Read the review. https://t.co/YAMAbaMcww #adhd
— Alan Schwarz (@alanschwarz) August 22, 2016
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