After years of reading, thinking, and talking with people, it’s become clear to me that the term “Asperger’s syndrome” is itself a problem. Put simply, we equate behavior with a label, when they are actually two different things.
Saying someone has Asperger’s creates an artificial description that misses a person’s unique characteristics. It implies that he or she is just like everyone else with Asperger’s when, in fact, people with Asperger’s can, and often do, feel, think, and behave very differently.
It obscures a person’s individuality by squeezing him or her into a diagnostic category, substituting a made-up term for the attitudes, skills, preferences, tendencies, behaviors, and so on, of an individual.
When we think of someone as having Asperger’s we miss what is different about that person and instead think of how he or she fits into this category we call Asperger’s. The end result is confusion rather than certainty and ambiguity instead of clarity. No longer is the person a person but he or she becomes a category, and what we can understand and appreciate about that person shrinks.
The label becomes the thing that defines a person.
The Artificiality of Asperger’s
Many of us, without questioning, assume there is such a thing as Asperger’s. In reality, Asperger’s syndrome doesn’t exist. It is, instead, the creation of psychologists, psychiatrists and others who decided that certain people share enough similar characteristics that they can be grouped into a separate diagnostic category.
Asperger’s syndrome, then, is an explanatory term. What it does is describe common behaviors of people. It groups and categorizes. It emphasizes common features some people have and distinguishes those features from the characteristics other people have.
But what it is not is an actual thing that people can have. It is not like a car or a house or arms or legs or anything else that we can see and touch. No one has Asperger’s in the sense of having one of these things. To say someone has Asperger’s is incorrect, since Asperger’s syndrome is only a concept. It is an idea, not a condition. And therein lies much of the difficulty we face when thinking about Asperger’s.
The Danger of The Asperger’s Label
There are several reasons why I am stressing this point about the artificiality of Asperger’s syndrome. As I indicated above, we typically assume everyone with Asperger’s has things in common, usually problems communicating, behaving normally in social situations and a tendency to engage in restricted, repetitive patterns of behaviors, interests or activities.
In actuality, the notion of common features is not true. There may be rough similarities in how people labeled as Asperger’s act in social settings, how they communicate and the interests they have, but the variations in the ways they behave are greater than the similarities. No two people diagnosed with Asperger’s are the same. They each may have difficulty, for example, communicating with others but the form of that difficulty is always different.
Moreover, people get so invested in the term Asperger’s that they overlook the specific problems someone has. Does a person have trouble making friends? Is he or she chronically lonely? How does the person carry on conversations? Do repetitive activities or interests interfere with the person’s happiness? If so, how? These are the questions that matter for that individual at that time. When we label someone with Asperger’s more often than not we miss what the person actually does, what he or she is actually like, and instead we think that we’ve explained and understood the person by claiming he or she has Asperger’s.
A final problem I want to mention has to do with the subjectivity of a diagnosis. Many people come to see me in order to find out if they Asperger’s. Doing so requires that I determine if they meet the criteria set out in the Diagnostic and Statistical Manual of Mental Disorders (DSM). But these are broad descriptions of behavior and who it is that interprets these descriptions determines whether or not the person in question fits them.
How I interpret, for example, the criterion that a person with Asperger’s have “persistent deficits in social communication and social interaction” shapes my decision about whether the person has Asperger’s. The same is true for another mental health professional. His or her personal understanding of persistent deficits in social communication will shape the diagnostic conclusion he or she comes to. And as we all know, two people, not matter how well trained and experienced they may be, are likely to have different understandings of something as abstract as “deficits in social communication.”
To label, then, is to invite misunderstanding. Labels create the illusion of objectivity. They imply that all those who have that label are alike. They mask what is unique about a person, the challenges they face and the solutions they are seeking. While we may not be able to avoid the label of Asperger’s syndrome, we would do well to try as best as possible to avoid the complications this label creates.