Hans Asperger (1906–1980) at work in the University Pediatric Clinic, Vienna performing a psychological test of a child.
Over at the Guardian, there is a delightful piece about an adolescent boy with a form of autism spectrum disorder known as Asperger’s disease. The entire article is worth reading for its insight into the life of an individual with Asperger’s, but one of the most telling lines emerges when the author tells us,
I begin to see what his mother means when she says Asperger’s can be more complex than the stereotypes suggest. “If there was a cure for Asperger’s,” she says, “I wouldn’t want it. Al’s just himself.”
Alex echoes his mother’s comments.
“I don’t think I’ve got a disability. I like being me.”
When patients say that they prefer the situation that they find themselves in, it is worth stopping and asking if the medicalization machine is moving too far too fast.
Hans Asperger first described the phenomenon in 1944, but the diagnosis of Asperger’s did not become official until 1992 when it was included in the International Classification of Diseases (ICD-10); in 1994, it was included in the Diagnostic and Statistical Manual of Mental Disorders, DSM-IV. It is worth quoting from the ICD-10.
A disorder of uncertain nosological validity, characterized by the same type of qualitative abnormalities of reciprocal social interaction that typify autism, together with a restricted, stereotyped, repetitive repertoire of interests and activities. It differs from autism primarily in the fact that there is no general delay or retardation in language or in cognitive development. This disorder is often associated with marked clumsiness. There is a strong tendency for the abnormalities to persist into adolescence and adult life. Psychotic episodes occasionally occur in early adult life.
As it turns out, it seems likely that despite the ICD’s disclaimer of uncertain nosological validity for the diagnosis, there are indeed individuals out there with Asperger’s, and it is important to recognize them. The important question is whether it should be considered a disease or not. This question is raging as the field gears up for the arrival of DSM-V (I previously wrote about this here). In a broadside at the process that is being used to develop the new version of DSM, Allen Frances, the individual who chaired the DSM-IV Task Force, argues that the approach being taken is way off track. The earnest group engaged in the herculean task of revisiting DSM push back. So it goes in academic medicine. [For a definitive historical look at DSM, I highly recommend Christopher Lane’s book Shyness.]
What concerns us is not squabbling over process or priority, but rather the impact that all of this has on individuals and society at large. Amid a number of concerns, Dr. Frances rightly reserves his strongest objection to the potential of DSM-V to further medicalize normalcy.
Undoubtedly, the most reckless suggestion for DSM-V is that it include many new categories to capture the subthreshhold (eg, minor depression, mild cognitive disorder) or premorbid (eg, prepsychotic) versions of the existing official disorders. The beneficial intended purpose is to improve early case finding and promote preventive treatments. Unfortunately, however, the DSM-V Task Force has failed to adequately consider the potentially disastrous unintended consequence that DSM-V may flood the world with tens of millions of newly labeled false-positive “patients.” The reported rates of DSM-V mental disorders would skyrocket, especially because there are many more people at the boundary than those who present with the more severe and clearly “clinical” disorders. The result would be a wholesale imperial medicalization of normality that will trivialize mental disorder and lead to a deluge of unneeded medication treatments—a bonanza for the pharmaceutical industry but at a huge cost to the new false-positive patients caught in the excessively wide DSM-V net. They will pay a high price in adverse effects, dollars, and stigma, not to mention the unpredictable impact on insurability, disability, and forensics.
Dr. Frances’ goes on to say,
The incredible recent advances in neuroscience, molecular biology, and brain imaging that have taught us so much about normal brain functioning are still not relevant to the clinical practicalities of everyday psychiatric diagnosis. The clearest evidence supporting this disappointing fact is that not even 1 biological test is ready for inclusion in the criteria sets for DSM-V.
So long as psychiatric diagnosis is stuck at its current descriptive level, there is little to be gained and much to be lost in frequently and arbitrarily changing the system. Descriptive diagnosis should remain fairly stable until, disorder by disorder, we gradually attain a more fundamental and explanatory understanding of causality.
Here we get to the heart of the dilemma. The field of psychiatry struggles to help patients, but the truth is that the neurosciences have yet to reveal the causes of psychiatric disorders. Without objective criteria to guide them, physicians fall back on descriptors which are imprecise and therapies which do not treat the underlying (and still unknown) pathology. Lacking the confidence to distinguish normal behavior from diseased, the field inadvertently medicalizes normalcy.
And Alex, the boy with Asperger’s, finds himself squarely in the crosshairs of this raging dispute.
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I couldn’t have put it better myself. Asperger’s is a racket. See this article:
http://racketaspergers.blogspot.com/
— when the likes of Steven Spielberg get diagnosed, alarm bells should, as the blog says, ring in all of us. What is it all about? we should ask.
The real puzzle for me are the attitudes of those who have been diagnosed with Asperger’s Syndrome, or, indeed, haven’t but would love to be so labelled. It seems on the one hand they oppose the label of disorder and say, “It’s just me being my neuro-atypical self.” But on the other hand they vehemently oppose any suggestion that Asperger’s is not a proper condition; they desperately want to keep it in the Diagnostic Manual.
It seems to me that they want to have it both ways. On the one hand they want to keep the official diagnosis because they feel it lends scientific credibility to their claim for identity. On the other, they want to empty the diagnosis of any semantic baggage that usually accompanies these labels. In fact, they want to empty it of its core meaning: disorder.
This is by no means unique to Asperger’s people. A number of neurological conditions, including ADHD, are now experiencing a peculiar de-medicalization. I have heard on a number of occasions from people diagnosed in their teens as hyperactive or inattentive that when they became of age they at some point discontinued their medications and accepted the condition as part of their personality. “I don’t suffer from ADHD,” says one business man, “I use it.”
When I listen to people diagnosed with various borderline neurological disorders describe their condition, I increasingly get the feeling that what we are witnessing is not so much a new medical classification as the birth of a neurological mythology of self (see Nicholas Rose’s Being Bioneurological Selves and related articles). It is in fact through listening to these stories of individuality and identity that I have finally begun to understand the full extent of what sociologists mean when they argue that medicine and health care have taken the place of religion in modern times.
The question then is, If neurology is replacing previous modes of identity-formation, based on communal ties and kinship relations, what kind of identities are formed by this burgeoning neuro-identity politics? One thing is certain: they are highly individualistic. One might also say socially alienated.
Has neurology inadvertently provided the conceptual frame for identity politics in the age of technology-driven social estrangement?