Syndrome by Any Other Name
Bowers, Drew, The Exceptional Parent
The word "syndrome" is one of those words that has slipped into our vocabulary with few realizing what exactly it means or all the implications it carries. I admit that I had never seriously thought about what all implications the use of the word carried until I was recently diagnosed with Asperger syndrome.
The word "syndrome" can be defined as "a group of signs and symptoms that occur together and characterize a particular abnormality or condition." Typically, a syndrome will be defined by major symptoms or signs, which must be present, and minor symptoms or signs, which may or may not be present. The word is used to facilitate classification and study of and also communication about certain conditions. The fact that a set of symptoms has been classified as a syndrome does not mean that everyone with that syndrome experiences the symptoms in the same way or that they contracted it in the same way or ways.
Therefore, classifying conditions as a syndrome has advantages and disadvantages. On one hand, classification, diagnosis, discussion, and, ultimately, treatment of the condition may become easier with classification as a syndrome. However, the concept of a syndrome may also lead to overgeneralization about a condition. Individuals may even come to be defined by their syndrome.
Perhaps the best case study in the pros and cons of classifying a condition as a syndrome is with Down syndrome. This syndrome is among the oldest, most researched, and most diagnosed. It was first described in 1862 by English physician, John Langdon Down, in a report that would be considered very discriminatory today. This report claimed that some of the features exhibited by those with Down syndrome were similar to those shared by Asian peoples. Down theorized that the syndrome represented a "regression" from what he felt were "more advanced" Caucasian characteristics to less advanced Asian ones. Nevertheless, Down's quest to explore all the symptoms of the disorder ultimately led to superior treatment of it.
Some may argue, however, that the classification of the condition as a syndrome paved the way for some of the darkest practices in psychiatry, such as the mass institutionalization of those with the syndrome, the forced sterilization of some, and even the outright killing of thousands in Nazi Germany. Increased awareness of the condition led some to believe that those affected by it were in some way inferior and that they should, at best, be kept out of society, and, at worst, killed. The classification of individuals as being affected with syndromes undoubtedly assisted in the persecution of them.
Public outcry eventually ended such atrocities in the years following World War II, but misunderstanding about and discrimination towards individuals affected with syndromes persists. Nevertheless, a prevailing mindset that such individuals should be helped rather than isolated from society has emerged. When the understanding of a syndrome becomes more advanced and treatment options improve, the syndrome moves away from being facilitator of stigma and towards being a facilitator of awareness.
The lifting of stigma is perhaps the most critical turning point in the treatment of a syndrome. Irving Goffman writes in his book, Stigma: Notes on the Management of Spoiled Identity, "discrimination ... reduce(s) (the) life choices (of the stigmatized)." Oftentimes societal discrimination can do more to hold an individual back than the symptoms of the syndrome with which he or she is challenged. Viewing individuals with syndromes as being ordinary people who have struggles, as we all do, is often difficult, but it is also very necessary.
There are not only difficulties that arise when a syndrome is recognized, but also those when a syndrome is not recognized or viewed with skepticism. Often, when a condition is labeled as a syndrome, some will claim that the syndrome is not distinct enough either from other syndromes/conditions or from normal behaviors/conditions. …