Finding Jesus in the Storm. John Swinton

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      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, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment. Patients with mental disorders deserve better.33

      Insel urged the field to leave behind the descriptive approach of the DSM and to develop a new diagnostic scheme based on solid, verifiable scientific research that focused on finding the biological roots of mental disorders.

Insel is correct to suggest that there is a need for a more rigorous and thick process of diagnosis than the DSM can provide on its own. There is an obvious weakness in a system where decisions are made and diagnoses are constructed on the basis of consensus around flexible concepts and constructions, without evidence that stretches beyond the particularities of committee votes. But is his alternative really better or even possible? As Gary Greenberg noted recently in the New Yorker: “Doctors in most medical specialties have only gotten better at sorting our suffering according to its biochemical causes … [but] psychiatrists still cannot meet this demand. A detailed understanding of the brain, with its hundred billion neurons and trillions of synapses, remains elusive, leaving psychiatry dependent on outward manifestations for its taxonomy of mental illnesses.”34 The evidence that Insel wants is, at least at the moment, simply not available. It may become available in the future, but for now, in general terms, the biological evidence for the root causes of all mental health disorders is at best speculative and at worst simply absent.35 Insel may well be correct that patients deserve better, but will a shift from describing symptoms to describing biology really produce better descriptions?

At a personal level, making such a claim without evidence must be deeply troubling for people living with mental health challenges who have been treated under the “old regime.” As Sarah Kamens has pointed out: “It’s … akin to telling patients that we made a huge mistake.”36 If the DSM has interrater reliability—that is, all psychiatrists are using the same set of criteria—but no validity (no empirical evidence to indicate the truth of a given diagnosis), then people have been diagnosed by a set of criteria that is reliable across the sector but lacking empirical verification. This leaves people living with mental disorders in a difficult situation. It is possible that their current diagnosis could be redescribed in the future, and they would have to rebuild their lives and sense of identity accordingly.

      It is true that the biological quest is intended to find better treatments and to eradicate symptoms. However, what if your symptoms are meaningful for you? If the only description of your situation is that you have a mental illness that is basically the same as a physical illness with symptoms that are meaningless, then your personal experience of your mental health challenges will be discounted as irrelevant. Critical as I have been of the DSM, at least it holds open the possibility that symptoms are more than mere biological malfunctioning. Such a suggestion—that symptoms are meaningful and should be responded to as such—is counterintuitive. For now, I urge the reader to remain open to the possibility. When we look more closely at the lived experience of mental health challenges, we will see the importance of recognizing the meaningfulness of symptoms and the dangers in trying to merge them into a single biological description. Insel is right: patients deserve better. The problem is that within a universe of multiple descriptions, his solution may not be as helpful as he assumes.

       The Danger of Reductive Explanation

It’s not that biological descriptions are not relevant or important. The problem is that they can easily become reductive. In his work on the nature of explanation, the sociologist Alan Garfinkel points out the reductive tendencies of explanation. When people think they have explained something, they tend to exclude other explanations, thus reducing understanding of the situation to a single explanation. “The reductionist claims that one class of phenomena, more or less well explained by some body of theory, is really explainable by some other theory, which is thought of as deeper or more basic; this, we say, reduces the apparent complexity of the world.”37 Such explanations reduce the complexity of multifaceted situations and experiences to a single explanation. Explanations become hegemonic when they insist on explaining unconventional mental health experiences without reference to other possible explanations. Garfinkel suggests that we

pay more attention to what exactly is being explained СКАЧАТЬ