Finding Jesus in the Storm. John Swinton
nature of the legislative system, which can in principle take them out of existence as well. For many people, it is not who they are as unique individuals that gives their existence substance and durability but the way society chooses to describe them at any moment in time. They remain in existence only as long as the category continues to be given social, political, and legal validation. It would be legislatively possible to eradicate homosexuality, heterosexuality, or perversion simply by changing the legal categories. We may find it difficult to imagine a society where people are forced to be homosexual. We may have less trouble imagining a society where people are forced to be heterosexual, as there are recent and even contemporary precedents to indicate that some would be quite comfortable with such a suggestion.26 We would have no difficulty at all imagining a society where Jewish people were legislatively considered to be less than human. Europe has a dark history that makes this point tragically. Recognizing how and why we make up people is of the ultimate importance.27
What Hacking observes about the ways we make up people resonates with the people-making power of the DSM. It is possible for a particular form of mental health challenge to come into existence only if psychiatry continues to name the set of experiences that make up such a diagnosis in the same way it always has. The problem is that the DSM keeps changing its mind. Unlike the scientific process that goes into the development of the diagnosis of physical illnesses, a committee decides the presence or absence of particular forms of mental health challenges. One reason why the DSM has to be continually revised, updated, and rereleased is that the various committees vote to add, take out, or modify particular diagnoses or aspects of diagnoses. At the end of this process of discussing, arguing, and categorizing, these committees present the categories and criteria that, in their opinion, form the basis for classifying people’s mental health experiences. The DSM has the power to create and establish, or at least to give formal, organized existence to, mental health experiences that are considered to be unconventional. These committees make up or invent mentally ill people, but they also reverse that process.
A good example of this de-creative process can be found in the response of psychiatry to homosexuality. In 1972, homosexuality was considered a treatable form of mental illness.28 In 1973, the American Psychiatric Association decided it was no longer to be described in this way. The change came about not because of any new scientific evidence but because of pressure from gay rights activists who felt the designation was unjust and unfair and that psychiatry was acting more in moral judgment than in the cause of clinical necessity. The description of homosexuality as a mental health issue was eliminated by the votes of the committee.
More recently, Asperger’s syndrome has been taken out of existence. Prior to DSM-5, it was possible to have Asperger’s syndrome. Now it’s not. Asperger’s has been subsumed into a broader category of autism. The National Autistic Society describes Asperger’s syndrome in this way: “People with Asperger syndrome see, hear, and feel the world differently to other people. If you have Asperger syndrome, you have it for life—it is not an illness or disease and cannot be ‘cured.’ Often people feel that Asperger syndrome is a fundamental aspect of their identity.”29 Although some people choose to retain the term “Aspie,” technically this way of being a person is no longer available. For many people, having Asperger’s syndrome was important. It was not, and still is not, a problem to be solved but is more a way of life that provides an important source of identity:
The news that the term “Asperger’s syndrome” will soon cease to exist has some parents concerned—especially parents raising “Aspie” children. Starting May 2013, the American Psychiatric Association’s new diagnostic manual, known as the DSM-5, will go into effect, stripping the well-known condition—a condition sometimes associated with loner geniuses like Albert Einstein and Andy Warhol—of its name. Instead, Asperger’s syndrome will simply be known as ASD-Level 1 (mild), a top rung in the ladder of autism spectrum disorders. For those who viewed an Asperger’s diagnosis as light-years away from clinical autism, this new classification may feel like a fall from grace.30
This change is problematic for some. Timothy Bumpus, who lives with autism, points out that “some of the most brilliant people had Asperger Syndrome, and you just can’t put that under the title of Autism…. This disability, which is ironically not at all a disability, causes the recipient to be antisocial, physically weak…. However, it is so much more. It allows a person to think in whole different ways, to see things in a different light than others.”31
I met a young man at a conference in Atlanta a couple of years ago. At that time, he proudly proclaimed himself to be an Aspie! The next time I met him, something had changed. He said to me: “The last time I met you I had Asperger’s syndrome. I was a wild, wild Aspie!! Now a committee has healed me of that, but they have given me autism … again!” We laughed. It was funny, but it was also telling. When something central to your identity can be changed by a committee without consulting you or others with similar experiences, you are forced to recognize that the fullness of your experience of mental health challenges is clearly not being incorporated into the diagnostic process.
Not all DSM diagnoses are as politically charged as same-sex relationships and Asperger’s syndrome, but they all involve the same process of being created, modified, rejected, or incorporated according to committee votes. The potential difficulties and the inevitable thinness of the descriptions that emerge from this process need to be recognized. Diagnoses are more like social kinds than natural kinds;32 they have a certain form of social existence in that at particular times society accepts them as useful explanatory concepts and acts accordingly. Diagnoses have an epistemology but no ontology. They are pencil sketches of human experiences that are frequently being erased and altered. On their own they tell us some potentially important things, but their descriptions are too thin to do all the work required for understanding mental health issues.
BIOLOGY AND THE THINNING OF MENTAL HEALTH CHALLENGES
The third area in which thin descriptions are given power is within the ongoing conversation around whether mental health challenges can be adequately explained by biology. On April 29, 2013 (just prior to publication of the fifth edition of the DSM), the director of the National Institute of Mental Health (NIMH), Thomas Insel, shook the world of psychiatry by stating that the diagnoses laid out in the DSM did not describe authentic disorders. They were constructs without any empirical basis. Because there are no biomarkers attached to the conditions the DSM describes as “mental disorders,” they could not be empirically verified and were therefore invalid as criteria for defining mental disorder. That being so, the DSM could not justifiably be considered clinically relevant. The NIMH is the leading federal agency for research on mental disorder in the United States. Insel said the NIMH would no longer fund research projects that rely exclusively on DSM criteria. The problem he highlights is that while the DSM criteria offer a measure of reliability, they are lacking in validity:
The goal of this new manual [DSM-5], as with all previous editions, is to provide a common language for describing psychopathology. While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability”—each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever. Indeed, symptom-based diagnosis, once common in other areas of medicine,