Before discussing the definition of autism specifically, there are general issues of definition that should be explored. We tend to think, incorrectly, of most words as stable and reflecting precise objects or actions (Schiappa 2003). However, even most philosophical realists accept that meanings can and do shift, sometimes suddenly but usually over time (Harris 2004, Nagel 1986).
Note: I am avoiding simplifications of Kuhn and rhetorical notions of “creating meaning.”
It is also the case that some words hold their general meanings better than others. Where we tend to see conflicts over definitions is on the edges of meaning. Specifically, we struggle most when a definition is based on criteria that are themselves subject to debate.
Health care issues are likely to be debated among researchers, clinicians, politicians, and, most importantly, patients. Edward Schiappa (2003) reminds us that debates involving scientific terms are political no matter who is involved in the discussion. Schiappa suggests scientists should not be assumed to be free from biases.
Definitions proffered by scientists may serve different interests than those put forth by non-scientists, but they serve interests nonetheless. Typically, “scientific” interests can be described as those “internal” to the language community to which a scientist belongs. … there is no reason to treat a “scientific” point of view as any more “real” or “correct” than the non-scientific definition. (Schiappa, 2003, p. 72)
Even the scientists and experts specializing in autism and education cannot agree on a single definition of what constitutes autism. More importantly, even a medical definition does not address the situation of a university having to decide what to consider a disability. Even if it were to become possible, universities should not adopt a strict medical definition of autism, which might rely on genetic profiles or Magnetic Resonance Imagining (MRI) tests. Instead, I promote the use of definitions based on the academic performance abilities of students. What we must ask ourselves is if a student with autism is disabled, and if so, to what extent is the student affected by the condition.
There are those unwilling to accept flexible, situational definitions of a disorder. In the case of autism and other mental health conditions, the least flexible individuals tend to view mental illnesses as concrete, certain conditions that can eventually be proved to exist as physical illnesses. According to psychiatrist and professor Thomas Szasz (2003), the problem with mental health definitions is that some groups have an interest in altering the common usage of the very foundational terms used: “mental health,” “disease,” and “disorder.” Because autism and related developmental disorders have sometimes been referred to as mental health diseases, it is worthwhile to consider the more traditional position of Szasz, since it challenges any effort to create a pragmatic definition of autism.
Unless we agree on the root meaning of the term “disease,” we cannot know what counts as a literal disease and what counts as a metaphorical disease, that is, not a true disease. … If we fail to settle the argument about what should count as a disease, or settle it on the basis of capricious, politically grounded criteria, we incapacitate ourselves from thinking clearly about should count as health care or treatment, who should pay for it, and many other health policy issues we now argue about. (Szasz, 2003, p. xxxii)
The difficulty with the argument put forth by Szasz is that his view is itself political. Szasz believes the mental health and pharmaceutical industries create disorders for reasons ranging from profit to control of “misfits” (Grinker, 2007). By demanding precision, Szasz repeatedly calls for the elimination of benefits and services for individuals who cannot prove their illnesses have physical origins. This is not an attack on the individuals affected, but it can seem that way. Szasz does not appear to acknowledge that situations vary, as do definitions of what constitutes a reasonable service in particular contexts. To Szasz, accommodations take power from those labeled, giving power to institutions. Others argue that making special accommodations for a gifted student with a mental health disorder serves a larger social value than strictly applying definitions and guidelines for accommodations. This is not an argument for easy access to services, but merely an argument that Szasz ignores contexts because of his fear that individuals will be marginalized via definition and classification.
While Szasz and other medical professionals admit scientific definitions are not applied universally, there is an implication that when a single, precise definition is not adopted by the general public those outside science must be ignorant. In mental health, in particular, we often lack the precision valued by Szasz and the health care industry. Szasz, who is critical of Attention Deficit Hyperactivity Disorder diagnoses, classifying addiction as a disorder, and several other trends in psychiatry, admits that politicians and advocates often have more influence and power than scientists. Reluctantly, Szasz is admitting that definitions can be cultural.
Scientific concepts are defined by scientists and then used, or not used, by people as they deem fit. … Authority over the scientific definition of disease must not be confused with power over controlling medical interventions available to people or with authority to judge the ethics of medical research, prevention, or treatment. In a free society, people have a right to think anything they want, including believing they have a disease even when they don’t. (Szasz, 2003, p. 24)
Definitions are problematic in general, but we tend to view scientific and medical definitions as being more stable. The problem is that this view is demonstrably incomplete. Basic terms in the sciences change slowly, due in part to the conservative nature of science (Gross, 2006). Even erroneous information is slow to change. As a distant example from psychiatric terms, consider the example of “planet.” We assume the criteria for what is or is not a planet is stable. However, with Pluto as an example, we can see that even terms used for hundreds of years face refinement and revision. Pluto did not stop orbiting the sun in the last two years, nor did the physical composition of Pluto change. Regardless, the definition of “planet” was refined and Pluto was recategorized (International Astronomical Union, 2006).
Moving closer to psychiatry, medical terminology is changeable like that of other sciences. Diseases that were considered valid categories centuries ago faded with better research and greater understanding of human anatomy. During the last fifty years we have managed to identify specific ailments we had not known in the past, though these conditions were certainly not new. What was once called “Swamp Sickness,” we now recognize as malaria, typhoid, or encephalitis (http://www.rootsweb.com/, 2007). Diagnoses were subdivided, just as types of solar bodies have been subdivided, as we have refined definitions.
Mental Health Definitions
When we begin to deal with psychiatric diagnoses, the issue of definitions becomes far more complex. For centuries in Western culture, women were said to be prone to “hysterics” and therefore subject to a variety of treatments. Serious clinicians treated hysteria as a diagnosed condition. Today, we might scoff at this, but there is also the likelihood that some cases of hysteria presented symptoms a researcher might classify as disorders using current diagnostic tools. We recognize that hysteria is a cultural artifact, but we also recognize that a patient once labeled hysterical could have experienced a genuine psychiatric condition.
There is no escape from cultural influences on psychiatry. Nor can we ignore the fact that “new” disorders are often the result of subdividing existing categories. The “melancholy” of the past might be depression, post-traumatic stress disorder, or any of several other conditions. As the mental health community subdivides conditions and establishes new conditions within psychiatry, the diagnosis of an individual is subject to change (Grinker, 2007; Szasz, 2003).
To understand mental health diagnoses, one must appreciate the importance of diagnostic manuals. There are three major diagnostic manuals, each containing words and terminology applied to mental health conditions. These are the DSM-IV-TR, the International Statistical Classification of Diseases and Related Health Problems Tenth Edition (ICD-10) and the French Classification of Child and Adolescent Mental Disorders (CFTMEA). The DSM and its companion publications, the ICD and the CFTMEA, establish which words are appropriate labels for mental health conditions. All three of these books contain checklists of symptoms. When a patient has the appropriate number of symptoms, a number which itself is an arbitrary choice by the editors of these guides, the patient receives a diagnosis. The definitions in these books are extremely important, since the labels applied to individuals determine treatments, public aid eligibility, insurance reimbursement within both private and national health care plans, and, just as importantly, how other individuals might view the diagnosed person (Cohen, 2005; Shore, 2003).
The World Health Organization maintains the ICD. The ICD is used outside the U.S., though the DSM is also consulted by most mental health professionals world-wide (Howlin, 2004). The ICD categorizes and describes symptoms for most known diseases and conditions. Because the DSM is specific to mental health, it tends to be more specific in its criteria for diagnoses. The DSM is a privileged text, intended primarily for members of the very professional organization that approves and publishes the work: the American Psychiatric Association. Mental health professionals with the most rigorous, culturally approved of credentials decide the terms they will use when sharing information. In effect, the DSM and the ICD are meant to ensure that health professionals use language consistently in research, publications, and in treatment of individuals (Grinker, 2007; Howlin, 2004).
These texts assume the reader understands medical concepts and terminology. The DSM and ICD are organized with the assumption that there are categorical disorders that can be diagnosed using checklists of symptoms. The DSM-IV-TR (2004) includes a statement in the introduction that because it is published for use by expert mental health specialists its use by individuals without clinical training can lead to “inappropriate application” of diagnoses. As Schiappa (2003) reminds us, definitions for most words are learned through usage. We turn to dictionaries in special circumstances, often to ensure we are using the “right” word in a situation. The diagnostic manuals are different. Assigning a label from one of these books to an individual carries treatment and legal implications.
The DSM is maintained by several committees, each with a particular specialty. As of 2007, the DSM has gone through six revisions: I (1952), II (1968), III (1980), III-R (1986), IV (1994), and IV-TR (2000). Each revision since 1980 has expanded the definition of autism by adding criteria and broadening symptoms qualifying for the diagnosis. It is important to appreciate that the checklists of symptoms and characteristics of mental health conditions found in both the DSM and the ICD are not associated with specific causes. If a patient has the symptoms associated with the diagnosis known as autism, it does not necessarily matter what caused the symptoms — the patient is still labeled autistic. This can be a difficult concept for those outside the mental health professions; we expect a diagnosis in mental health to resemble the diagnoses made by infectious disease specialists. We do not know the precise causal factors behind most mental health conditions and may not for many years, or even decades, to come. Instead, clinicians apply labels based on the diagnostic checklists.
A difficulty within the mental health professions is the shift from cognitive and psychoanalytic theories towards an approach favoring genetic and physical causes for many conditions (Coleman, 2005; Bauman & Kemper, 2005). As Grinker (2007) suggests, some psychiatric researchers would like future editions of the DSM to include mentions of particular genetic, neurological, and physical markers linked to specific conditions. If psychiatry moves towards physical, recordable phenomena to define mental health conditions, it might be an attempt to employ definitions closer to those used by other medical fields. This seems to reflect a cultural bias towards empirical, measurable data (Gross, 2006; Schiappa, 2003). Mental health professionals, as much as those affected by their terminology, must decide if definitions should be based on observable behaviors, as in the current DSM, or if the definitions should move towards physical causes.
By reflecting on the unstable nature of definitions in general and mental health definitions in particular, it is hoped that those working in university disability services will recognize that labels such as “autistic” do not correspond to precise, static definitions. Once we recognize the risks of embracing words as perfect descriptions of people, we can move beyond blind acceptance of mental health terminology and diagnoses.