Coming out with Asperger’s

My name is Sam and I am a 45-year old man living with Asperger’s Syndrome. Or to borrow a term from John Elder Robison, I am an Aspergian. This may come as a surprise to some long-time friends and acquaintances who didn’t know this about me. Then again, it might not. Either way, Asperger’s isn’t who I am. Who I am is a father, a husband, a provider, a friend, a companion. I am an emergency management professional and higher education executive. I’m a motorhead, a music lover, a carpenter, a hiker, and a home brewer. Asperger’s doesn’t define me—I define Asperger’s.

Discovering in 2012 that I have Asperger’s Syndrome (these days called “High-Functioning Autism”) certainly did explain a lot, unexpected as the news was. “Let’s put it this way… If you are in a room with 99 other people out of the general population, statistically you are likely to be smarter than 98 of them. On the other hand, you are also likely to be the most ill-equipped person in the room to handle that situation gracefully.” This was the neuropsychologist who provided my Asperger’s diagnosis after two exhaustive days of testing and evaluation, summarizing the basic implications of my Autism into digestible form. Very smart but socially awkward. High IQ, low EQ.

Of course, I’ve lived with this “High-Functioning Autism” my entire life. It’s the only existence I’ve ever known, the fundamental framework through which I perceive and interact with the world around me. Every experience of my lifetime has been informed by my Autism because it is the operating system through which I process everything I encounter. (I’m told that neurotypicals—those “normal” people without Autism—actually experience the world very differently than I do, but I find it difficult to wrap my brain around such a notion.)

As the parent of a child on the Autism Spectrum, I’ve learned that people have wildly varying levels of understanding regarding Autism Spectrum Disorders. This is in part because the Autism Spectrum encompasses such a wide range of presentations. When I tell someone I have Autism, they are often skeptical at best because I don’t meet their “Rainman” expectations. (Please note: If you drop a box of matches on the floor, I will have no idea how many are there.) And with people so often misunderstanding (or mis-assuming) what High-Functioning Autism means for me, I’ve become reluctant to share my diagnosis with others. But to understand me, you have to understand my Autism. So I’ve decided it’s time to “come out” as an Aspergian using this blog as a platform.

I will admit that my 2012 diagnosis took me by surprise. For the first 39 years of my existence I was of course aware I was more than a bit quirky, and certainly socially awkward. But I never thought of myself as having “a different operating system.” To the contrary, I always assumed everyone around me experiences the world the same way I do. True, I struggle with communication and social interaction while my peers handle such things far more adeptly. As a small child I would have major tantrums over a simple haircut (I couldn’t stand the sensation of scissors cutting through my hair—something most people can’t even feel. I still don’t like it to this day, though it doesn’t usually result in a meltdown any longer.) I have far more sensitive hearing than others, I hate putting anything like sunscreen on my skin, and certain types of lighting make my head throb. Meanwhile I always assumed that everyone else has the same type of visual/spacial cognitive abilities that I do—abilities that I now know I share with Temple Grandin and a surprising minority of others in the world.

Living with (and struggling with) the challenges of Autism can make it easy to lose sight of the many things I am to many people. Recently I’ve found myself more and more caught up in the challenges of my Autism. “Stuck” if you will, and allowing it to impact my work life, my family life, and how I fundamentally feel about myself. Moreover, I’ve allowed the attitudes of others about my Autism to further inform those feelings.

So I’ve challenged myself to start writing this blog as a means to get unstuck, to move forward again, and to share my journey with others. I believe these posts will help me be more mindful of the need to live better, manage my Autism better, and be a better citizen in the world. I also offer my story in hopes that it might be helpful and inspiring to others traveling along similar paths.