We live in a society driven by labels. We are labeled by our political stance, our marital status, our academic classification. The labels are endless, and we freely give them to ourselves and to others consciously and subconsciously. Some labels we take with pride, finding a personal identification and confidence in what the title represents. Other labels are destructive and confining, sometimes even demeaning and cruel. No matter the use, it is no secret that labels are used readily in today’s world. What is less common is for a label that has grown into a community of its own, a label that has become used frequently and proudly, to be stripped away, to be rendered obsolete.
In December 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM) V made the decision to remove “Asperger syndrome” from their manual. Asperger syndrome is a developmental disorder associated with Autism Spectrum Disorder (ASD) that is normally characterized by higher-than-average intellectual ability along with impaired social skills. Often, repetitive behaviors are also exemplified. Asperger’s is often referred to as a “mild form of autism.” The popularity of the term “Asperger’s” has rapidly grown over the years into a community within itself in which those diagnosed, or those who believe they should be, proudly label themselves as “Aspies”. Society has even begun placing the label on geniuses of the past, including Albert Einstein and Leonardo da Vinci. Because of the significance this term has for many people, it comes as no surprise that DSM V’s decision has been met with an array of emotions. To some, the reasoning behind the removal is logical. After all, the requirements to receive the diagnosis of Asperger’s in DSM IV were nearly identical to these of autism. However, to others, the label they have come to identify with has been suddenly stripped away, often leaving them without a formal diagnosis. Now, many are left wondering what repercussions, if any, the removal of “Asperger’s” from the medical world will have on the Asperger’s community.
I think the removal of the term will initiate different reactions from different communities that encounter Asperger’s. This is mainly because I believe there is a difference between the social world and medical world when it comes to Asperger’s and ASD. The social world encompasses the person who is on the spectrum, along with their family and friends. These are the individuals who learn to live with the disorder, to embrace it and to thrive with it. The medical world encompasses those who study the disorder and aim to diagnose and treat it. One sphere deals with the personal or the emotional. The other deals with the logical or the facts and figures. The term “Asperger’s” innately holds different weight in these different spheres. Therefore, the removal of the term from the medical world will have very different effects from what we will see in the Asperger’s community. In the medical world, the change will merely cut down the overlap between Autism Spectrum Disorders diagnoses. In the social world, the idea of self-identification is called into question. How one with the diagnosis decides to handle the change will differ from person to person. But it is important to remember that the removal of the medical term does not necessarily coincide with the removal of personal identification.
I still hear professionals who work with those on the spectrum using the term “Asperger’s.” The changes in DSM V are still so novel that many professionals and even many people on the spectrum have not heard of the removal. Many “Aspies” will proudly continue to use this term, whether or not they know about the elimination from DSM V. The label has become more than just a diagnosis; it has become a way of life. It no longer relies solely on a medical practitioner, testing or guidelines. It has instead morphed into a word that encompasses many who have felt lost in the world they live in, unable to thrive in a “normal” social setting. It has become a label that provides comfort, community and pride.
I think the medical and social consequences of the removal of the term “Asperger’s” from DSM V will be entirely separate. Although those on the spectrum can no longer formally receive the diagnosis, I do not think this will affect the self-identification of those already under the “Asperger’s” label. I think “Aspies” will continue to proudly consider themselves as such, and the removal of a name from a book cannot remove the identification and understanding they have within their community and within themselves.