RJ Sangosti/The Denver Post/Getty Images
RJ Sangosti/The Denver Post/Getty Images

ADHD is real

Misdiagnosis is a problem, but saying the disorder does not exist only increases stigma

March 31, 2014 7:00AM ET

In the preface of his new book, “ADHD Does Not Exist,” Richard Saul says, “I wrote this book to be provocative.” In it, he advances discussion of attention deficit hyperactivity disorder by usefully dissecting the reasons behind widespread misdiagnosis and stimulant abuse — both genuine and alarming problems. But whatever progress his book offers is stymied by his reckless claim that it is not a real medical disorder. He even insists on referring to ADHD with quotation marks — a decision that made me, a diagnosed sufferer of ADHD, feel as though I’d been punched in the gut.

Two recent articles in The New York Times support Saul’s thesis, albeit more gently, merely hinting that ADHD is not a disorder but, rather, trickery on the part of large pharmaceuticals to push stimulants. In one piece, reporter Alan Schwartz quotes Keith Conners, a psychologist at Duke University, who refers to ADHD as a “concoction to justify the giving out of medication at unprecedented and unjustifiable levels.”

What Saul and authors of ADHD trend pieces tend to misunderstand is that thousands, maybe millions of people (particularly adults) legitimately suffer from ADHD and are not trying to manipulate the system or seeking excuses for normal human behavior. It took me months to come to terms with my diagnosis, before I even considered medication or treatment. (By the way, to advocate for the option of stimulants is not to deny other treatment methods, such as therapy.) As ADHD skeptics grow louder, many of those already diagnosed are being unjustly stigmatized and may feel increasingly compelled to hide their struggles.

Stigma and shame

The all-too-common and problematic tendency of those on the ADHD beat is to downplay its symptoms, their debilitating effects and the troubling outcome when someone who needs a diagnosis doesn’t get one. Commentators often appear to assume that the dramatic increase in ADHD diagnoses over the past 20 years is largely the fault of conniving pharmaceuticals and a quick-fix society rather than a result of increases in awareness and understanding of ADHD as the science improves. But such broad-stroke theorizing does a disservice to the real problem of misdiagnosis — say, of children and teens struggling with bipolar disorder or vision problems but displaying many attention-deficit symptoms.

Saul’s book offers a good case study of such damaging tendencies. ADHD, he argues, is a group of symptoms — impulsivity, distractibility, hyperactivity — with other underlying causes, such as Asperger’s syndrome, sensory processing disorder, substance abuse and even absence seizures. On the basis of identifying ADHD as an umbrella disorder that covers a host of symptoms, he thereby dismisses it as something that doesn’t exist in its own right. Saul, who has treated patients suffering from debilitating ADHD symptoms for more than 50 years, should know better.

Stigma, just like a bad diagnosis, delays and thus denies treatment.

To be fair, many of Saul’s claims are reasonable and even important. In one section, “The Conditions and Disorders Responsible for ADHD Symptoms,” he offers case studies of patients he has seen in more than five decades of practicing medicine. He contends that he has helped patients by encouraging more precise diagnoses — and thus more precise treatments. “Treatment delayed is treatment denied,” he writes frequently. And there is truth to this. One of the patients he mentions, a 15-year-old named Franklin, was diagnosed with ADHD because he fidgeted and couldn’t complete his classwork, but the diagnosis meant that he did not receive treatment for what was really wrong: He had obsessive-compulsive disorder. Once he received the correct diagnosis, he was taken off his stimulant medication (which only made his symptoms worse) and treated with nonstimulant medicine and psychotherapy. His OCD symptoms almost completely vanished.

But when Saul lists the reasons he feels the disorder is so wildly misdiagnosed, he gets patronizing: Doctors are lazy, the media are obsessed with it, and “ADHD makes a great excuse,” he writes. “The diagnosis can become an easy-to-reach-for crutch. Moreover, there’s an attractive element to an ADHD diagnosis, especially in adults — it can be exciting to think of oneself as involved in many things at once, rather than stuck in a boring rut.”

These remarks are as offensive and tone-deaf as they are common, reflective of a widespread cultural skepticism toward mental illness, particularly depression and anxiety. But the perception that people with ADHD diagnoses flaunt their disorder as special or desirable is preposterous to me. I, for one, did not seek a diagnosis. And once I received one, I was unwilling to talk about it with close friends or even my family. Regarding adults like me, there’s the idea that ADHD is a child’s condition resolved by puberty. This shame is commonly felt among those patients — adult, high-achieving, driven — who don’t necessarily fit the typical hyperactive-young-boy mold and who have read countless articles dismissing ADHD as a cultural phenomenon or fad.

Stigma, just like a bad diagnosis, delays and thus denies treatment. Saul’s dismissive tone adds another layer of shame to those already struggling with forgetfulness, distractibility and disorganization — symptoms easy to internalize as personal failings. This can prevent people from seeking help. His vilification of stimulants, which have helped me and others diagnosed with ADHD (many of whom I’ve talked with extensively), exacerbates this. 

Greater precision

All is not lost. A fortunate slate of new books and articles on ADHD seeks to incorporate nuance into the attention-deficit discussion. “The ADHD Explosion: Myths, Medication, Money and Today’s Push for Performance,” by psychology professor Stephen P. Hinshaw and health economist Richard M. Scheffler, cites the abundance of ADHD misdiagnoses yet does not feel compelled to deny the disorder or denounce the usefulness of stimulants. In an interview with The Los Angeles Times, Hinshaw agrees that too many children are diagnosed after a 10-minute visit with a pediatrician, even when the symptoms are actually correlated to learning disorders, depression or even abuse. But we should talk about these issues compassionately, without automatically painting the misdiagnosed as frauds complicit in a vast ADHD conspiracy.

A recent article in The New York Times discusses a trend among doctors to more precisely diagnose ADHD in children, with physicians receiving training to look for the right symptoms. Indeed, the health community can best advance the discussion of ADHD misdiagnosis by proposing viable solutions rather than dismissing the disorder as phony.

If the symptoms of ADHD exist — and they most certainly do — then ADHD exists. In Additude magazine, which covers the disorder from the vantage point of both experts and people with the condition, Dr. Ed Hallowell writes, “To say, then, it does not exist is like saying that the nose on your face does not exist. You may not want to call it a nose, but whatever you call it, it’s there.”

Maria Yagoda is a freelance writer who lives in New York. Her writing has appeared on The Wire, Jezebel, The Philadelphia Inquirer and Nytimes.com.

The views expressed in this article are the author's own and do not necessarily reflect Al Jazeera America's editorial policy.

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