Not Diseases, but Categories of Suffering

By GARY GREENBERG

Not Diseases, but Categories of SufferingYOU’VE got to feel sorry for the American Psychiatric Association, at least for a moment. Its members proposed a change to the definition of autism in the fifth edition of their Diagnostic and Statistical Manual of Mental Disorders, one that would eliminate the separate category of Asperger syndrome in 2013. And the next thing they knew, a prominent psychiatrist was quoted in a front-page article in this paper saying the result would be fewer diagnoses, which would mean fewer troubled children eligible for services like special education and disability payments.

Then, just a few days later, another front-pager featured a pair of equally prominent experts explaining their smackdown of the A.P.A.’s proposal to eliminate the “bereavement exclusion” — the two months granted the grieving before their mourning can be classified as “major” depression. This time, the problem was that the move would raise the numbers of people with the diagnosis, increasing health care costs and the use of already pervasive mind-altering drugs, as well as pathologizing a normal life experience.

Fewer patients, more patients: the A.P.A. just can’t win. Someone is always mad at it for its diagnostic manual.

It’s not the current A.P.A.’s fault. The fault lies with its predecessors. The D.S.M. is the offspring of odd bedfellows: the medical industry, with its focus on germs and other biochemical causes of disease, and psychoanalysis, the now-largely-discredited discipline that attributes our psychological suffering to our individual and collective history.

This tension has been high since at least 1917. That’s when Thomas Salmon, a future head of the A.P.A. — which was founded in 1844 — noted that psychiatry’s “classification of mental diseases is chaotic.” He worried that “this condition of affairs discredits the science of psychiatry and reflects unfavorably upon our association” and urged his membership to forge a diagnostic system “that would meet the scientific demands of the present day.”

The American Psychiatric Association has been trying to do just that ever since, mostly by leaving behind ideas about the meaning of our suffering in favor of observation and treatment of its symptoms. In 1980, it hit on the strategy of adopting a medical rhetoric, organizing those symptoms into neat disease categories and checklists of precisely described criteria and publishing them in the hefty — and, according to its chief author, “very scientific-looking” — D.S.M.-III.

That book, with its more than 200 objectively described diagnoses, would have made Dr. Salmon proud. By meeting the scientific demands of the day, it was credited by many with having rescued psychiatry from the brink of extinction, and its subsequent revisions have been the cornerstone of the profession’s survival as a medical specialty.

But as all those Diagnostic and Statistical Manuals have stated clearly in their introductions, while the book seems to name the mental illnesses found in nature, it actually makes “no assumption that each category of mental disorder is a completely discrete entity with absolute boundaries dividing it from other mental disorders or no mental disorder.” And as any psychiatrist involved in the making of the D.S.M. will freely tell you, the disorders listed in the book are not “real diseases,” at least not like measles or hepatitis. Instead, they are useful constructs that capture the ways that people commonly suffer. The manual, they go on, was primarily written to give physicians, schooled in the language of disease, a way to recognize similarities and differences among their patients and to talk to one another about them. And it has been fairly successful at that.

Still, “people take it literally,” one psychiatrist who worked on the manual told me. “That is its strength in a political sense.” And even if the A.P.A. benefits mightily from that misperception, the troubles on the front page are not the organization’s fault. They are what happens when we expect the D.S.M. to be what it is not. “The D.S.M. has been taken too seriously,” another expert told me. “It’s the victim of its success.”

Psychiatrists would like the book to deserve a more serious take, and thus to be less subject to these embarrassing diagnostic squabbles. But this is going to require them to have what the rest of medicine already possesses: the biochemical markers that allow doctors to sort the staph from the strep, the malignant from the benign. And they don’t have these yet. They aren’t even close. The human brain, after all, may be the most complex object in the universe. And the few markers, the genes and the neural networks, that have been implicated in mental disorders do not map well onto the D.S.M.’s categories.

“We’re like Cinderella’s older stepsisters,” a psychiatrist told me the other day. “We’re trying to stick our fat feet into the delicate slipper so the prince can take us to the ball. But we ain’t going to the ball right now.” Which is why we might feel a little sorry for the beleaguered A.P.A.

On the other hand, given that the current edition of the D.S.M. has earned the association — which holds and tightly guards its naming rights to our pain — more than $100 million, we might want to temper our sympathy. It may not be dancing at the ball, but once every mental health worker, psychology student and forensic lawyer in the country buys the new book, it will be laughing all the way to the bank.

Gary Greenberg, a psychotherapist and the author of “Manufacturing Depression,” is writing a book about the making of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders.

Source: http://www.nytimes.com/2012/01/30/opinion/the-dsms-troubled-revision.html?_r=1&emc=tnt&tntemail1=y

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I Had Asperger Syndrome. Briefly.

By Benjamin Nugent

FOR a brief, heady period in the history of autism spectrum diagnosis, in the late ’90s, I had Asperger syndrome.

Asperger's syndromeThere’s an educational video from that time, called “Understanding Asperger’s,” in which I appear. I am the affected 20-year-old in the wannabe-hipster vintage polo shirt talking about how keen his understanding of literature is and how misunderstood he was in fifth grade. The film was a research project directed by my mother, a psychology professor and Asperger specialist, and another expert in her department. It presents me as a young man living a full, meaningful life, despite his mental abnormality.

“Understanding Asperger’s” was no act of fraud. Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. The manual, still the authoritative text for American therapists, hospitals and insurers, listed the symptoms exhibited by people with Asperger disorder, and, when I was 17, I was judged to fit the bill.

I exhibited a “qualified impairment in social interaction,” specifically “failure to develop peer relationships appropriate to developmental level” (I had few friends) and a “lack of spontaneous seeking to share enjoyment, interests, or achievements with other people” (I spent a lot of time by myself in my room reading novels and listening to music, and when I did hang out with other kids I often tried to speak like an E. M. Forster narrator, annoying them). I exhibited an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus” (I memorized poems and spent a lot of time playing the guitar and writing terrible poems and novels).

The general idea with a psychological diagnosis is that it applies when the tendencies involved inhibit a person’s ability to experience a happy, normal life. And in my case, the tendencies seemed to do just that. My high school G.P.A. would have been higher if I had been less intensely focused on books and music. If I had been well-rounded enough to attain basic competence at a few sports, I wouldn’t have provoked rage and contempt in other kids during gym and recess.

The thing is, after college I moved to New York City and became a writer and met some people who shared my obsessions, and I ditched the Forsterian narrator thing, and then I wasn’t that awkward or isolated anymore. According to the diagnostic manual, Asperger syndrome is “a continuous and lifelong disorder,” but my symptoms had vanished.

Last year I sold a novel of the psychological-realism variety, which means that my job became to intuit the unverbalized meanings of social interactions and create fictional social encounters with interesting secret subtexts. By contrast, people with Asperger syndrome and other autism spectrum disorders usually struggle to pick up nonverbal social cues. They often prefer the kind of thinking involved in chess and math, activities at which I am almost as inept as I am at soccer.

The biggest single problem with the diagnostic criteria applied to me is this: You can be highly perceptive with regard to social interaction, as a child or adolescent, and still be a spectacular social failure. This is particularly true if you’re bad at sports or nervous or weird-looking.

As I came into my adult personality, it became clear to me and my mother that I didn’t have Asperger syndrome, and she apologized profusely for putting me in the video. For a long time, I sulked in her presence. I yelled at her sometimes, I am ashamed to report. And then I forgave her, after about seven years. Because my mother’s intentions were always noble. She wanted to educate parents and counselors about the disorder. She wanted to erase its stigma.

I wonder: If I had been born five years later and given the diagnosis at the more impressionable age of 12, what would have happened? I might never have tried to write about social interaction, having been told that I was hard-wired to find social interaction baffling.

The authors of the next edition of the diagnostic manual, the D.S.M.-5, are considering a narrower definition of the autism spectrum. This may reverse the drastic increase in Asperger diagnoses that has taken place over the last 10 to 15 years. Many prominent psychologists have reacted to this news with dismay. They protest that children and teenagers on the mild side of the autism spectrum will be denied the services they need if they’re unable to meet the new, more exclusive criteria.

But my experience can’t be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.

The definition should be narrowed. I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.

Benjamin Nugent, the director of creative writing at Southern New Hampshire University, is the author of “American Nerd: The Story of My People.”

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Proposed DSM 5 Changes and Autism: What Parents & Advocates Need to Know

by Lee Anne Owens

Proposed DSM 5 Changes and Autism: What Parents & Advocates Need to KnowIn May of 2013 the new diagnostic criteria for Autism Spectrum Disorder will be distributed to doctors via the fifth version of the Diagnostic and Statistical Manual of Mental Disorders (DSM 5). Think of the DSM 5 as the Bible of diagnostic criteria, developed and written by the American Psychiatric Association (APA).

One of the most discussed changes in the DSM 5 Autism Spectrum Disorder (ASD) is the removal of Asperger’s syndrome and PDD-NOS as individual diagnoses. Under the new diagnostic criteria, Asperger’s and PDD-NOS will come under the umbrella of ASD. For example a child whose diagnosis is currently Asperger’s syndrome would receive a new diagnosis of Autism Spectrum Disorder with specifiers included, such as “Autism Spectrum Disorder with fluent speech” or “Autism Spectrum Disorder with intellectual disability.” According to Dr. Bryan King, of the APA’s Neurodevelopmental Disorders Workgroup, this change could mean a decrease in the differentiation of services available to those previously diagnosed with Asperger’s syndrome. (http://autism.about.com/od/diagnosingautism/a/Why-Asperger-Syndrome-Will-Disappear.htm) In layman’s terms this means that some children will benefit from a greater availability of needed services because they have a diagnosis of ASD, rather than Asperger’s.

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