What's in Label? by Brian R. King LCSW

Brian R. King is a well-respected social worker who has Aspergers, writes extensively on topics related to Aspergers, and counsels and works with many individuals with a variety of social and emotional needs. He has graciously permitted me to reprint in full his commentary on the prospect that the upcoming DSM-V will no longer include Aspergers as a diagnosis. Apparently the draft new criteria is due to come out on February 10, 2010 and the new edition is due out some time in 2013.

         

    There has been a flurry of discussion generated by a recent article titled A Powerful Identity, a Vanishing Diagnosis, which I included in this edition. In this article, I will reflect upon Asperger’s and other labels that we use to limit and expand our lives.

            We are surrounded by labels, every day of our lives. We rely upon labels to tell us the nutritional content of our food. We read the labels on our clothing to tell us where it’s made and what it’s made of. There are some that pride themselves in wearing clothes with labels that say, “Made in the USA,” “100% cotton” or will only eat foods with labels that say, “Organic.”

     People will take pride in the label that defines their heritage, “I’m Irish” or “I’m African American.” People will take pride in the label that defines their religious affiliation. Why aren’t people afraid to associate with these labels?  It’s because it is very likely that being associated with these labels will result in positive feedback for the person associated with it. It is because these labels are thought of primarily in terms of their positive characteristics.

     Now, on the other hand, what if you added a word to the end of some of these labels? What if you were no longer Irish but instead, had “Irish Disorder.” What if the way you behaved and viewed the world as a result of a particular set of religious beliefs was referred to as “Christian Syndrome?” How would you view a person associated with that label?  Is this a label you’d want to associate with under these circumstances?

     Is it a wonder, then, why many associated with the label Asperger’s Syndrome run from it, deny it, hate the mere mention of it in relationship to themselves? Why is hearing this label so devastating? In the case of those I meet, it stems from the fact that, unlike learning of your “Italian Ancestry”. which you inherited and can help you define who you are in a positive way, Asperger’s can do the very opposite. Learning of Asperger’s Syndrome comes in the form of a diagnosis, often pursued because those around you suspect there is something wrong with you. The diagnosis confirms that they’re right.

     What a revolting way to learn about yourself - going to professionals in the pursuit of a label that defines you according to your challenges. Let’s totally turn this around. What if learning of Asperger’s followed the path of learning of your ancestry. Since their is plenty of evidence to support the genetic link to Asperger’s, couldn’t this be viewed as learning your Neurological Heritage? There is great diversity in our heritage, including neurodiversity. This is how I refer to it. It refers to four generations of Spectrumites in my family, that I’m aware of. 

     What if we dropped the discriminatory, judgmental label of “Syndrome?” Now what is Asperger’s? It is simply a name, a value neutral term that remains to be defined by the person who chooses to accept it as a descriptor of everything that’s unique about them. When using the more colloquial term “Aspie” to describe yourself, you’ve now identified yourself as a member of a group of people, a community of approximately 70 million people worldwide, based on recent statistics. The beautiful part is you’re in charge of defining what it means to be an Aspie. A syndrome leaves no room for positive interpretation.  It’s a shame that it ever occurred to someone to use it to describe another human being.

            Fortunately, we all have the inherent right to choose how we want to see ourselves, and what language we use to describe ourselves. Being told you have a syndrome doesn’t have to define you any more than a racial stereotype can reasonably define the people it’s directed at. 

            When I learned Asperger’s was a word that suited me well, I also realized I would have to take charge of how others understood it, if I was to have a chance to be viewed as just another human being with my own set of unique strengths and challenges.

            In my journey of self discovery, I had the privilege, recently, of talking to some very enlightened people with various physical challenges.  One gentlemen, referring to his blindness, stated that, “I’m good at a lot of things, seeing with my eyes just isn’t one of them.” What if this way of thinking were extended to other challenges? Someone who is paralyzed might say, “I’m good at getting around just not with my legs.” Someone with Asperger’s might say I’m great at many things but perspective taking and social skills trip me up sometimes.”

            How much easier do you think it would be to have a conversation about yourself, in an accepting and positive way, if you could label yourself, and think of yourself, as just another human being, who has his or her own strengths and challenges, just like anybody else? Please give this some serious thought. In the mean time, I’ll refer to myself as 100% Aspie, Made in the USA and proud of my Neurological Heritage.”

            I cannot, however, gloss over the implications of the removal of the term Asperger’s from the DSM-V which is due to be published in a few years. It was in the DSM-IV, published in 1994, that the term Asperger’s was introduced. The very existence of such a book is both a burden and a blessing. A blessing in that it can succinctly identify aspects of the human mind that, when allowed to persist in a certain state (i.e.. Depression), can become a barrier to a person living the life they wish for themselves. Such identification can lead an individual to seek guidance, and other assistance, to help remedy the depression that restrict them.

            The DSM-IV became a curse when those with Asperger’s who suddenly found an explanation for the challenges of their lives finally explained, also found the passionate interests of their lives (special interests) referred to as “symptoms.” Suddenly, the things we saw as special about ourselves were being used to describe what is perceived as wrong with us. Many felt vindicated after a life of being called lazy, unmotivated and other words that insisted their seemingly limited path in life was the result of choice alone. 

            The greatest blessing that has occurred since the emergence of the term Asperger’s is what those to whom it refers have done to artfully incorporate into a celebration of their unique world view, a view that has been discovered to be likely constant throughout human history; a constant in some of the most creative minds in history, who’s contributions have altered the course of human history for the better.

            This view of Asperger’s it is critical to note, emerged from those to which the term applies. The more critical view of it is primarily used by those to whom it doesn’t. Why the disparity? Because unfortunately, the very labels that some use to unite themselves can simultaneously be used to divide. We need look no further than the labels of religious groups and political parties to see the power of inclusion and exclusion first hand.

            Those to whom the labels don’t apply tend to use their exclusion from a certain group as a means to criticize that group. Those who identify with the term Asperger’s have coined a term for the general population as a whole, the term Neurotypical (NT). In a perfect world, the terms Asperger’s and NT would simply refer to two groups coexisting on the vast spectrum of Neurodiversity. Unfortunately, the terms are increasingly used as descriptors of a group of oppressed people and those that oppress. Thank goodness I am seeing more voices, including my own, that strive to emphasize our commonalities and not our differences.

            The solutions to this divide between two groups that, although they share many of the same goals, to love and be loved, to belong and make their own contribution to the world, go about accomplishing these goals in such dissimilar ways. When their paths cross, the difficulty of realizing they are actually trying to accomplish many of the same things creates conflict, instead of collaboration.

            I, by no means, claim to have the solution of building a bridge that would allow us for crossing this great divide, but I have some ideas. Starting with the DSM-V, again wishful thinking here, I would love to see it’s tone completely overhauled in favor of a description of the various patterns of Neurodiversity in the human being. The book could be called the Clinician’s Guide To Neurodiversity.  Such a book could describe the strengths and challenges of each group, without terms such as disorder and syndrome. It is also critical that multiple disciplines, including social workers and those with the label, weigh in on the description of what it means to be a member of that group. Under these circumstances, books that ultimately hold so much power to determine the course of person’s life, in terms of insurance coverage, access to educational resources and employment support, will be correctly assessed and described with the representation of those whom these assessments affect.

            Should books such as the DSM continue to keep making such determinations to a disconnected elite group of members, this would be the equivalent of a literary dictatorship, in which an individual or group makes all the decisions on the lives of groups of which they are not a part. Taxation without representation, if you will.

I have no illusions about the authors of the DSM heeding my suggestions, or those of my fellow Spectrumites. What I can control is this: I can control my own effort in assessing what labels I use to categorize the experiences and people in my life. I can also emphasize the increase in labels in my vocabulary, to increase my collaboration with others and decrease our conflict. I see myself as a human being first and an Aspie second. As such, I have far more common ground with others than may be apparent.

            I will continue to advocate, write about it. Through my own words and actions, demonstrate how we can  come together as members of the human spectrum, in order to view each other as members of a global village; a village in which everybody’s contribution matters and a village in which all of it’s members work together to see to it that no one is left out. Most importantly, the realization that a unique contribution is to be valued alongside a typical contribution. Typical contributions (what everyone else is doing) have value, following laws to respect the rights of others, for example. Far too often, the typical is emphasized at the expense of the unique. When you look at the course of human history, there is one fact that is abundantly clear. The typical keeps the world working, but it is the innovation of the unique that moves it forward and helps it grow.

            It is time to see and celebrate the value of the labels in our lives, but we must emphasize the labels that serve to describe a more balanced view of who a person is. No book, such as the DSM, can ever been seen as useful if all it describes is part of a person. No woman would accept being defined by her physical attributes alone, though cultural tendencies often reduce her to such. No man would ever accept being defined by physical strength alone, though some try to. These tendencies exist ,I feel, because we learn to emphasize parts of ourselves instead of all of ourselves.

            Marketers tell us what parts of ourselves to feel bad about based on the product they’re trying to sell us. Schools encourage us to feel bad about what we don’t know and only validate us when we demonstrate knowledge of the things they’ve decided it is important for us to know. As individuals, we encourage each other to feel bad about the things that differ from our own preferences. I am a member of the human race first and foremost, and do my utmost to see, in others, the things I have in common with them, instead of quickly defaulting to the differences.

            The labels I use to refer to my commonality with others, the things I have learned others want, as do I, and in making an effort to connect on these things, I found it easier to connect with others and more difficult to be divided from them. The labels I choose, I choose because they communicate a very important truth to each person I encounter. They communicate a message I want to given to me and I, therefore, make every effort to communicate to others. That message is, “In this moment, who you are matters.” Thanks for reading.

 

ABOUT THE AUTHOR:

Brian R. King is a Licensed Clinical Social Worker in private practice in Naperville, IL in which he brings a unique three fold perspective to the world of Asperger’s. Brian is not only a father of three sons on the Autism Spectrum and has a practice focusing exclusively on working with Asperger’s clients and their families. Brian is also blessed with Asperger’s himself.

Brian has become known worldwide for his positive approach to Living the Asperger’s experience and is dedicating his time to serving as an Ambassador between the Asperger and Neurotypical communities. His goal is to help both communities learn to better communicate, appreciate and cooperate with each other in a spirit of mutual respect.

Through Brian’s Books, Audio Programs, Presentations, Magazine and website he has become a Positive Force for Asperger’s. You can learn more about Brian and his work at www.Spectrumite.com

 

Comments

[FT Dad]

I am good at a lot of things...typing well thought out and lengthy comments is not one of them. LOL

Thanks for such a great article!

[Daunna Minnich]

What I enjoyed about your article, Brian, was a feeling of being drawn through a "gallery" of labels, with a spotlight coming on as I approached each label along the way. Some of the labels were instantly recognizable, even if I'd never quite seen them before. How true that when we choose to label ourselves "Irish" or "Aspie" that we do so with a smile and comfortable sense of belonging, but for someone else to impose a label of "Irish Disorder" or "Asperger's Syndrome" upon us could quickly suck away our sense of self and well-being.

An unfeeling person might say, "If the shoe fits, wear it." But why wear someone else's cast-off shoe? Shouldn't we all have the freedom to choose our own shoes — and labels?

Thanks for the food for thought. You must be a fan of Kathie Snow and the Disability is Natural way of thinking.
 

[Joseph Hromy]

I am not a big fan of labels for anyone. Putting a person's name first will always be the way to go. In some circles of thought, especially psych rehab; anytime that we put a disability behind a person's name this action then limits the person's power. The disability label can really hurt people.