A commenter to my recent post on depression asked, "Is the diagnosis good for anything?" Referring to Asperger syndrome as a "crude label", the writer states that it has "zero explanatory value" and describes a set of qualities that are really nothing new. No argument there, I suppose AS by any other name would smell as weird. Of course it's nothing new. People like us have always existed. What's new, relatively speaking, is the way these traits are construed as a disorder or quasi-medical condition.
Sometimes when I discuss autism with people not familiar with the idea of disability as a cutural construction, someone will start talking about labels. "Why do you feel a need to label yourself?" is a question I've heard a few times. "What's the point of diagnosis at your age?" is another one. A satellite to the labelling conversation is the accusation that I have somehow "given up" since accepting the truth of my autism.
I've written about labels before, and how having a name for the seemingly separate mysteries of my existence has allowed me to experience life more fully and view myself as unbroken. To be able, finally, to answer the many questions I've asked myself and those that others have asked of me has been the most meaningful gift I could have received. Why do I walk the way I walk, and why do I have such problems with talking? Why don't I understand small talk, why do I always seem to have some all encompassing obsession? Why do I get so irritable with noises other people don't notice? Why do I love repeating words and phrases? Why do I seem to misunderstand others so often? On and on and on.
Having a name for this, seeing that it might all fit together, rather than being a large collection of independently weird traits, helped me make sense of my life and stop blaming myself and get on with the business of living. Stigma happens, yes. My experience is that is happens with or without a diagnostic label. The labels "weird", "lazy", "crazy", etc. seem to be sufficient excuses to ostracize others, if one is inclined to do that.
Yesterday, I had the opportunity to speak to a group of about 50 special education teachers. I had been invited to share information on a social club I coordinate for Asperger teens. I included some general information about autism and Asperger syndrome, both from literature and personal observation. I was able to stand up in front of this group and tell them that we are not broken and do not need training to behave more "normally" so much as we need acceptance for our different ways of being. Several people approached me afterward, asking if I'd like to speak at their schools or other groups. I am happy to be able to make these small attempts at changing attitudes, little by little.
This is something I would never have been able to do a few years ago. I could barely talk at all if more than one other person was in the room with me. As I told the group of teachers, I have always been that kid in the back row, trying very hard to become invisible. I've changed a lot.
Part of the change has resulted from accepting a "label" that gave me a lens through which to view previously inexplicable behaviors, perceptions and preferences. The bigger part of it, I think is the result of what's been called "giving up". I stopped trying so hard to do things "the right way" and started accepting the ways that I could do things. Now when I speak, I don't worry that I'll forget something like the word for "puppy" or that I'll be rocking back and forth a bit or that I'll throw in too many "umm"s and "ahh"s.
I don't worry anymore. I know I will do these things. They are a part of me, not affectations to be eliminated, but a part of the presentation, a part of the message. Form and function, acceptance in action. Just one of the things I couldn't do before, but now I can, now that I've finally "given up".