The Trouble With Asperger's Syndrome

Howard Markel, MD, PhD


April 13, 2006

One of the pitfalls of attending medical school is the distressing propensity to self-diagnose the very illness discussed during that day's clinic. At no point in a young doctor's training is this truer than when focusing on mental health disorders.

And now that medical texts, journals, and cutting-edge reports are widely available to laypersons, we should expect self-diagnosis to play an even larger role in the doctor-patient relationship of the 21st century. This is not necessarily a bad thing. Most pediatricians heartily agree that no one knows a child better than his or her parents do, so when working in concert to diagnose thorny issues, we should look at this democratization of information as a social good.

Nevertheless, I was struck by the pitfalls of self-diagnosis when a patient's mother recently gave me a copy of the book, American Normal: The Hidden World of Asperger's Syndrome, by Lawrence Osborne.[1]

Neither a medical student nor a psychiatrist, Osborne describes the very human predilection of self-diagnosis in his meandering account of how he arrived at a self-diagnosis of Asperger's syndrome, the form of high-functioning autism that is becoming increasingly well known to pediatricians and parents. Indeed, the author begins by describing how he became concerned that he might have this condition shortly after reading about it and reflecting on his youth.

People with Asperger's syndrome have difficulty learning social rules, cues, or nuances. Although they rarely form lasting friendships and are often socially isolated, they tend to be bright and absorb themselves in mastering esoteric topics. Unlike classic or severe autistic individuals, however, they are neither "idiot savants" nor "head-banging mental patients rocking in their chairs and screaming."[1] The more formal description of Asperger's syndrome, from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV), is detailed in the Table below.

Although this syndrome was first described by the Viennese pediatrician Hans Asperger in 1944 and, over the past few years, has become an increasingly popular diagnosis du jour, Osborne asks the critical question, Is Asperger's syndrome truly a variant of autism, a distinct psychopathologic entity, or merely eccentric behavior?

As a child, Osborne felt like a social misfit because of several obsessions, including a remarkable facility with the designs of all the tanks deployed on the Eastern front during World War II. Today, Osborne reports that tens of thousands of people have been diagnosed with Asperger's syndrome, and it is the fastest-growing psychiatric diagnosis among children living in affluent Silicon Valley. Their burden of eccentricity has compelled him to embark upon a road trip "to visit the places and people hidden but often in plain sight: not just the experts, or caregivers, or even just children, but Asperger's people (if they can be called that) living out their lives."

His goal in writing American Normal was to depict them not as "psychiatric oddities, dark goblins inhabiting the infamous Diagnostic Manual, but only varyingly intense and wayward variations of myself."[1]

Along the way, we meet many "Asperger's people" from the past and present. Osborne is always careful to guard his tenuous retrospective diagnoses of the departed as the result of the conclusions of others. Nevertheless, he spends an inordinate amount of time exploring the quirks of Thomas Jefferson and pianist Glenn Gould as evidence of their having had the syndrome. He also suggests that a battery of geniuses ranging from Einstein to Bartok may have had it, too. As a card-carrying medical historian, however, I am always skeptical of such retrospective diagnoses, typically made years after the patient in question has died.

More illuminating are his descriptions of contemporaries who allegedly have Asperger's syndrome. This gallery of friendly, insightful -- and, yes, eccentric -- human beings includes a man who makes mathematical calculations "at the speed of light"; a self-taught piano virtuoso who must play a medley of Nirvana songs mixed with snippets of Debussy and Beethoven each afternoon at 12:10 sharp; and someone who can tell you the exact location, fees, and amenities of every motel in Kansas.[1]

What is particularly depressing about many of these individuals is the overflowing cornucopia of psychiatric medications they are prescribed for their conditions. But are these people suffering from a disease? One man with Asperger's wisely responds with another question: "Normalcy is highly overrated, you know? We have 2 eyes, so why can't we have 2 perspectives on social life?"[1]

The essential message of Osborne's book is that, across cultures, there exists a wide range of tolerance for human variability. For example, Osborne briefly explores a rare condition among Malaysians called "latah." People with this condition are easily startled by sudden, loud noises and immediately go into fits of cussing, convulsions, and trance-like states. Yet, in Malaysia, rather than being avoided or medicated with prescription drugs, latahs are "accepted, even celebrated, for their oddity".[1]

Alas, we are a nation fixated on "pathologizing" many complex demeanors -- ranging from the overanxious state of some adults to the behaviors of children who have more energy and shorter attention spans than is comfortable for their overworked teachers or parents. Sadly, our reflexive need for diagnosis is accompanied by an uncontrollable urge to treat with a torrent of potent medications. One can only wonder what future generations will conclude about our society's eccentric impulse to medically label and chemically alter those human behaviors that are temporally or culturally viewed as abnormal. Perhaps sometimes, as Osborne nods to Freud, a quirk is just a quirk.