Between Disorder and Diversity: On Mental Disorders and Neurodiversity

Vincent Van Gogh, Iris, 1889, at the J. Paul Getty Museum, Los Angeles © Bridgeman Images
 ATELIER DES LUMIERES

I recently had a conversation with a friend* (information may be altered to respect privacy) about his issues with up and down mood cycles. He told me he has a condition called ‘cyclothymia’, which refers to a pattern of mood elevation (i.e., called hypomania) followed by mood depression. It is essentially considered a milder form of bipolar disorder. As we conversed, he also was clear that he did not view this condition as a disability but rather a diversity in the way his brain functioned. He was easily able to identify how his cyclothymic functioning benefited him; for instance, it afforded him major periods of immense productivity during which he would make innovative art and scientific research. Evidence suggests that these advantages are not unique to him, but are generally seen when cyclothymia is “well-managed.” The quandary here is, of course, knowing what to manage and what to promote. How do we, as individuals and societies, separate the wheat from the chaff—so to speak—when it comes to aspects of psychological functioning? To put it differently, where do we draw the line between disorder and diversity?

The association between suffering (whether considered psychological or spiritual) and giftedness is not new, however artists such as the great poet Rainer Maria Rilke or the psychiatrist Kay Redfield Jamison have helped us understand these interactions in relatively contemporary terms. Nor are these associations unique to Western societies; religions across the world all seem to have provisions for liminal states of consciousness that may resemble madness but reflect, on a deeper level, a greater level of illumination or spiritual awareness. As mentioned earlier, so-called disordered psychological functioning may even be more prevalent amongst the most successful. Into these crosscurrents, we find the concept of neurodiversity, which was evidently coined in 1998 by a sociologist and journalist. The term was constructed and deployed as part of an argument advocating for a social model of disability. In contrast to a biomedical model of disability—which assumes that disability is an objective dysfunction with an identified abnormality in healthy structures (i.e., disease)—the social model argument that it was actually societal barriers (e.g., discriminatory practices, lack of access to supports) that ‘disables’ people who could otherwise be functional and even regarded as healthy.

Our doctrinal source of disorders, the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5), recognizes that “no definition can capture all aspects” (p. 20) of psychopathology or ‘mental disorders.’ However, there are certain elements which are thought to be common to all so-called disorders. First is thought to be a deviance or abnormality in a person’s thinking, emotional management or behaviors that is considered to be relatively universal (i.e., commonly regarded across all cultures and historical times). This deviance is thought to result from a dysfunction in universally recognized psychobiological structures or developmental pathways. Thirdly, the disorder should predictably result in some disability in social, occupational or other important life activities for the affected individual. Although presumably dealing with psychosocial phenomenon, the DSM-5 seems to rely heavily on a biomedical—rather than social—model of disability. However, their definition—as it is laid out here and in the DSM-5—is subject to a number of logical and scientific challenges. To begin, I am not aware of much cross-cultural or cross-historical research establishing universal let alone discrete, well-defined criteria for deviant thinking and behaving. In fact, the DSM itself seems to redefine itself with every edition—dropping disorders, changing disorders, and finding new disorders—casting doubt as to the stability and permanence of these concepts over time and place. Although one could argue that this merely reflects ‘scientific progress’, the science remains fairly opaque to the public regarding just how mental disorders come to be classified as they are. Those who have managed to investigate have found that these decisions are largely made in backroom committees without any guaranteed immunity from lobbyist and career interests. Furthermore, as Freud and others have noted, perhaps the only taboos observed across most all cultures and histories are limited to incest, cannibalism, necrophilia and coprophilia  behaviors. And these behaviors may be considered less mad than bad—that is, profane because they violate a social contract rather than develop in the course of individual suffering per say. To its credit, the DSM-5 has replaced the blatantly Eurocentric (and voyeuristic) section on ‘culture bound syndromes’ and now insists that there is “seldom a one-to-one correspondence of any cultural concept with a DSM diagnostic entity” (p. 758). They request that practitioners consider the cultural syndromes, idioms, and explanations when assigning a diagnosis of a disorder. However, this recommendation further undermines their original definition of a mental disorder (i.e., as a problem firmly within the individual and not in the cultural rules/prescriptions themselves). Thirdly, there is evidence that our modern and evidently universal or global disorders may be more the result of exporting Western models of illness and treatment than something that existed a priori within the non-Western culture itself. However, this is a bit of an aside, as the neurodiversity community does not necessarily disagree with the deviance or dysfunction elements that define a disorder. However, they find the disability element deeply problematic as it implies that the individual is responsible for their poor fit within society. The neurodiversity advocates argue that it is the culture itself that must accommodate these individuals, as it does for ‘neurotypical’ individuals.

Beginning in the 1980s, neurodiversity became something of a buzzword for the autism rights movement, which regards the psychological (i.e., cognitive, social, behavioral) functioning of those on the autism spectrum to be the result of natural variations in the human brain rather than a medical abnormality or disease. The term was initially used to rebuff unhelpful ways of conceptualizing socially deviant behaviors (i.e., bad parenting) and has since been adopted into advocacy efforts against medical mandates to “cure” or change conditions that are not representative of so-called normal or ‘neurotypical’ functioning. Neurodiversity advocates instead campaign for greater access to support services, technologies, education and other supports to help affected individuals fully express themselves while also adapting within society. The long-term goal, as mentioned earlier, is to help societies adapt their assumptions, resources and structures to permit the full inclusion of these affected individuals; thus changing the expression of the society itself.

Interestingly, the term neurodiversity itself implies that the social model of disability is compelling only for psychological or ‘neuro’ conditions. But here exists what philosophers call a substance dualism, or a fundamentally different way that we separate the ‘mind’ (and its attending structures) from the rest of the body. For instance, we generally accept that bodies (or body parts) should be adjudicated into medically abnormal or diseased categories (i.e., cancerous, hypertensive, diabetic, obese, inflamed, broken, torn, virulent, etc.). While there is a gaining acceptance of diversity within biomedical conditions (e.g., obesity, homosexuality, androgyny) that were once solely considered to be disordered, these exceptions are largely framed around aspects of psychological identity. A person can identify as being fat but is generally discouraged from identifying as being severely insulin deficient (although they can be recognized as diabetic), pain-centered or having untreated cancer (unless all treatments have been exhausted). Indeed, there is far more ambiguity regarding the distinction between disorder and diversity when it comes to the body’s modes of thinking, verbally communicating, emoting, or socially relating. It does not help matters when our widely regarded concepts of psychological disorders are still so nebulously defined.

There have also been some brutal attempts in the past to impose a firm separation between disorder and diversity. The most well-known of these are the eugenics movements, which have included forced sterilizations and mass executions of those not considered fit for the given society’s utopian ideals. While these movements may seem atrocious in the light of present awareness, they were spurred by scientific, legal and social exigencies of the time. Against these considerations however stood a relatively modern and bold understanding of human existence; that of every individual as endowed with inalienable rights. While this form of eugenics floundered against this new bioethics, another kind of eugenics has been unchallenged and even encouraged. These are the positive eugenics programs that encourage reproduction for the so-called ‘genetically advantaged’, sperm donations, and social programs that attempt to eliminate socially undesirable qualities (i.e., sloth, gluttony, stupidity) from the population. Utopianism has always had an interesting relationship with tolerance and diversity.

In the post-war 20th century, clinical psychology and psychiatry took on its own utopianism projects with seemingly innocuous but naïve aspirations. It started as an enterprise to create a society in which individuals were happier, calmer, and more personally refined. Nearly half a century onwards, the mental health field has all but abandoned its initial pursuits at producing such designer people. But it has not completely given up the ghost; instead, it has pivoted towards a more nuanced and perhaps realistic understanding of what people generally aspire towards. We do not aspire to be happy all of the time—not really—but we could mostly all agree to be a little more ‘emotional acceptant’, ‘conflict tolerant’, ‘interpersonally empowered’, ‘self-efficacious’, ‘self-expressive’ and ‘goal-driven.’ While the ultimate goal—and largely the individual’s responsibility—towards his/her/their disorder is management; does having diversity beholden an individual towards utopian goals as well? Ought the neurodiverse individual be expected—with society’s support—to move towards acceptance, tolerance, empowerment, efficacy, expression and goal-directedness? As psychology wades further into this century with its new utopianism unwavering, we must come back to these questions of disorder and diversity again. I propose the following set of questions to perhaps guide us—professionals and public—along the journey:

  • Where is the line between mental disorder and neurodiversity?
  • What factors define where the line is drawn?
  • How thick is the line? What are the well-known boundary cases and how are they usually handled?
  • What are the individual’s responsibilities towards their mental disorder? What about towards his/her/their neurodiversity?
  • What is the society’s responsibility towards an individual’s mental disorder? What about towards his/her/their neurodiversity?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: