All On the Spectrum? The (Mis)Use of Psychiatric Labels
In 2014, behavioural neurologist dr. Richard Saul publishes ADHD does not exist: The Truth About Attention Deficit and Hyperactivity Disorder. In this controversial book Saul claims that there are dozens of conditions that produce symptoms similar to those of attention-deficit hyperactivity disorder (ADHD), a disorder he had been researching and treating for fifty years. Saul’s aim is to show that raising an entire generation dependent on stimulants to suppress such symptoms is not an adequate solution. The title of Saul’s book (more than the somewhat more nuanced message it delivers) has been largely picked up by journalists, parents, teachers and researchers, and the debate that rose from it is still on-going. How did it happen that so many people ended up diagnosed with a disorder that was now brought forward by some as fictitious, and that psychiatrists have prescribed medication to treat a presumably non-existent disorder for decades now? Should we perhaps approach ADHD as a spectrum of symptoms that each individual varies on, rather than as a disorder?
This specific discussion about ADHD brings up fundamental questions about the nosology (the medical classification) of mental disorders in general. What makes a disease or disorder real or fictitious? Can we even say there is a categorical distinction between having and not having a specific disease and disorder?
In answering the first question, most psychologists or psychiatrists will refer to the Diagnostic and Statistical Manual of Mental Disorders. The first edition of this manual was released in 1952, and has only gained popularity up until the current version: the DSM-5 (2013). The DSM-5 is the handbook for psychiatric diagnosis of the American Psychiatric Association, and is used in the diagnostic process but also as a basis for education and scientific research, not only in the US but globally. If someone is referred to a psychiatrist, all possible diagnostic outcomes are confined and defined by the content of the DSM.
Ever since people started classifying mental disorders, the practice has also been fiercely rejected by some. The anti-psychiatry movement of the sixties and seventies opposed the medical model of illness and treatment, and expressed worry about pathologising anyone that functioned outside the norm. The debate was led by influential thinkers such as psychiatrist Thomas Szasz and philosopher Michel Foucault. In his book Madness and Civilization: A History of Insanity in the Age of Reason, Foucault claims that the term madness as we use it today is nothing more than a social construct that is rooted in the Enlightenment period (the ‘Age of Reason’) and that it is used to separate ‘us’ from ‘the others’, those who are not living according to societal norms.
Although the actual anti-psychiatry movement was rather short-lived, its voice is still heard in today’s debate. For example, more recently, Making Us Crazy: DSM – The Psychiatric Bible and the Creation of Mental Disorders (1997), a book by professors Herb Kutchins and Stuart Kirk, serves as a prominent example for the public questioning of the (DSM) practice of psychiatric labelling. And there are many more strong opponents of the so-called ‘diagnostic bible’. Googling ‘DSM bible’ gives about half a million results, most of which consist of angry claims that the American Psychiatric Association promotes drug companies by over-diagnosing the ‘normal’, and that in turn, their organization is ‘built on drug money’ (www.cchrint.org). When research by Cosgrove and colleagues (2006) showed that many of the panel members deciding upon the diagnostic criteria in the DSM indeed had financial links to the pharmaceutical industry, the longstanding suspicion of the APA’s conflict of interest seemed confirmed. As Carl Elliott, a bioethicist studying the philosophy of psychiatry, put it: "The way to sell drugs is to sell psychiatric illness. If you’re (a drug manufacturer) it's in your interest to broaden the category as far as possible and make the borders as fuzzy as possible." (Washington Post, 2001).
Another major point of critique is the fact that DSM categories and criteria are based on consensus rather than informed by scientific research. In the essay “A brief historicity of the Diagnostic and Statistical Manual of Mental Disorders: Issues and implications for the future of psychiatric canon and practice” Kawa and Giordano discuss how the different historical versions of the DSM show that the psychiatric nosology has always been strongly embedded in the psychological models and theories of their time. For example, the DSM-I of 1952 was divided in a ‘Psychobiologic Unit’, which assumed causes in organic brain dysfunction, and a ‘Psychogenic Unit’, which sought explanations more in patients’ reactions to socio-environmental stressors: a true reflection of the popularity of psychodynamics and psychoanalysis at that time.
However, the inescapable yet worrisome consequence of creating categories of the (ab)normal based on agreement is that these categories will be a reflection of general societal norms and values. Shocking as it may seem today, the Psychogenic Unit of the DSM-I contained a diagnosis of ‘Sexual Deviation’ which stated: “The diagnosis will specify the type of the pathologic behaviour, such as homosexuality, transvestism, pedophilia, fetishism and sexual sadism” (DSM-I, p. 39). The fact that a few decades ago all these ‘types’ of individuals could be diagnosed by a psychiatrist as suffering from sexual deviation, shows the danger of a categorization system that depends on consensus alone. If the main goal of creating psychiatric labels is to use these labels as a starting point for evidence-based treatment, we should be able to expect that these labels are based on a theoretical foundation that is equally evidence-based.
Although the critics of using labels in psychiatry have made some valid and important points, their discussion of the matter is often without nuance, and not always evidence-based either. The biggest problem in attacking psychiatric labelling, or the DSM specifically, lies in finding an alternative. Thomas Szasz would have argued that it suffices to say that we all just vary on a number of characteristics that in interaction with each other, and importantly, with the environment, will or will not need to be treated as symptoms. Today we can see that there is, in fact, a trend toward dimensional rather than categorical approaches to psychiatric labelling. That is, there is a shift from focusing on diagnostic categories to focusing on the separate factors that can lead to maladaptive functioning. These factors can be psychological constructs such as experiential avoidance (the effortful avoidance of aversive private experiences; Hayes et al., 1996, Chawla & Ostafin, 2007), or more biological factors, such as the factors leading to a deficiency in the neurotransmitter serotonin, that could play a role in a more dimensional approach to depression (Pöldinger, Calanchini and Schwarz, 1991).
The dimensional trend is already evident in the change of terminology for pervasive developmental disorders from DSM-IV to DSM-5. The previous diagnoses of autistic disorder, ‘pervasive developmental disorder, not otherwise specified’ (PDD-NOS), Asperger’s disorder, Rett’s disorder and childhood disintegrative disorder are now categorized under the general denominator autism spectrum disorder (ASD). It is acknowledged that there is a broader autism phenotype, a range of symptoms, or rather characteristics, that extends to the broader population. Cascio (2012) discusses the existence of a ‘neurodiversity movement’, that uses an identity politics approach to ASD and states that it should be viewed as a positive ‘neurovariation’. Treatment should, according to this movement, not focus on changing people but rather on assisting them. In an attempt to honour this increasing recognition of people with autistic symptoms not wanting to be seen as suffering from a mental disorder, several researchers have switched to the term ‘autism spectrum condition’ (ASC) instead of ASD.
As a PhD student researching adults diagnosed with autistic disorder and Asperger’s disorder, or more recently autism spectrum disorder, I could not agree more with this recognition of ‘autism’ as a broad spectrum and an interesting ‘neurovariation’. I feel that this dimensional approach is indeed more realistic, and could serve as an example for our views on mental illness as a whole, as the idea of biological and non-biological factors leading to neurovariation probably applies more generally. Although I see such adaptations in the DSM as a positive development, these changes emphasize the importance of being careful with diagnostic labels, not only in using them but also in changing them. It can be very confusing if someone who was once diagnosed with Asperger’s disorder gets told that this disorder no longer exists. Since psychiatric categories are treated so much as real, existing entities, a sudden change in these categories can feel as if part of one’s identity is taken away. This might be especially the case for Asperger’s, which is a diagnosis that is worn with pride by many. As Joshua Muggleton describes beautifully in The Guardian (2012), “For me, and many like me, the diagnosis is much more than a label. It can be a source of pride; a badge of honour for surviving in a world that, for us, seems chaotic, overwhelming and downright scary.” He goes on to tell about his initial confusion and disappointment with the fact that this label would cease to exist. Apart from the fact that dealing with change is generally considered difficult for people with Asperger’s, he fears what will happen to people like himself, that currently have this diagnosis: will they have to be re-assessed? And what if that means they no longer receive any diagnosis – will they still be able to get the support they need? Still, Muggleton acknowledges that research has shown there is no way to differentiate Asperger’s from autism other than the degree of impairment and that thus, the change in DSM-5 is a step in the right direction. He concludes on a positive note: “I will be proud to call myself someone on the autism spectrum.”
Interestingly, even if he agrees with this more dimensional approach, Muggleton’s essay also shows the other side of the coin: that there can be actual benefit in receiving a psychiatric diagnosis. In addition to the fact that a diagnosis is often necessary in order to have access to care and medical insurance, it can also bring relief in itself. The metaphor of all pieces of the puzzle finally falling together after a long time of ‘feeling different’ in some way, is often heard. In discussing the use and misuse of psychiatric labels, it should not be forgotten that people seeking psychiatric help are looking for answers, for an appropriate approach and treatment of their problems, not for more questions and controversy. We should acknowledge this, and realize that the existing categories in the DSM-5 serve as a useful common language for both psychiatrists, teachers, patients and researchers. They should also serve as the starting point for research, which should eventually result in an approach to mental problems that is more and more evidence-based. In the end, this might hopefully leave more room for dimensional rather than categorical thinking, so that the next time a neurologist claims a certain disorder in fact does not exist, we are not so much shocked, but rather encouraged to search for what is best for the people suffering from its symptoms.
Annabel Nijhof is a PhD student at the Department of Experimental Clinical and Health Psychology at Ghent University, and a great fan of interdisciplinary research. After doing a study on ‘how our brain listens to literature’ during her master’s internship in Nijmegen, she now studies the concept of mentalizing in adults with autism spectrum disorder, both at the level of behaviour and at the level of brain activity.
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Cascio, M.A. (2012). “Neurodiversity: Autism Pride Among Mothers of Children with Autism Spectrum Disorders”. Intellectual and Developmental Disabilities, 50 (3), p. 273 – 283.
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Kutchins, H., & Kirk, S. (1997). Making Us Crazy: DSM – The Psychiatric Bible and the Creation of Mental Disorders. New York: Free Press.
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Saul, R. (2014). ADHD does not exist: The Truth About Attention Deficit and Hyperactivity Disorder. HarperCollins Publishers Inc.
Vedantam, S. (2001). “Drug Ads Hyping Anxiety Make Some Uneasy”. The Washington Post. Accessed 06.07.2016 https://www.washingtonpost.com/archive/politics/2001/07/16/drug-ads-hyping-anxiety-make-some-uneasy/8fe2eea2-b780-48cd-9872-1d3802e83147/