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.
Sam- I’ve always seen you as a smart, wonderful and compassionate person. All the rest is fine and doesn’t really matter to me. Your courage is awesome and inspiring, But then again— that’s Sam!!!
Great post Sam! Working with you has allowed me to be able to understand the differences along the spectrum, but I’ve never thought of you as anything other than a person. Keep defining yourself regardless of what others may tell you!
Is this news? Yes
Is this a surprise? Yes, to me
Are you both brave & making a difference with your blog? Yes, absolutely
What else is important about this? You are still the wonderful Sam Adams that I have known for many years, only that you are getting even better than l already knew you to be. That’s is surely enough for me.
Sam, that is awesome that you are sharing this in this format. My grand daughter has autism and everything you quoted, shared and experienced here is what we are trying to help her with as she grows in to a woman. Thank you so much for posting this !
Bob, those are indeed the things we’re trying to help our own daughter with as she grows up. There’s some interesting literature out there on how Autism — and Asperger’s in particular — presents differently in women than men.
Sam, you never cease to amaze me! Kudos for your openness and honesty. You will probably never know how many people you have helped by your willingness to share this aspect of your life. Thank you. I love you.
Thanks Aunt Eunice, I love you too!
Thank you so much for sharing! I need to process this, reread it and think deeply about our 24 years of friendship, through all of those early experiences. I love quirky, I am quirky, I love deep, intellectual discussion, sometimes they are hard to find. I have not seen the socially awkward challenges you are referring to, maybe I accepted them long ago or I just don’t care and love you the way you are.
I am sad that you have internal challenges and would like to understand that better.
Would I miss some of the things I love about you if you didn’t have Aspergers? I couldnt imagine you any other way and appreciate you this way.
Thank you for sharing and I look forward to your continued posts so I can understand better what you are going through,
My social challenges tend to diminish with people who I’m close to and comfortable with (such as you and Chris). And I should say that I wouldn’t give up my Asperger’s for even a moment. It’s who I am and what makes me good at the things I love to do.
Megan Thompson Lovoi
Hi Sam, what an inspiring post. Our son also has what is traditionally known as Aspergers (High functioning Autism). There is so little known about Autism, yet so incredibly prevalent and something we as a society have “known” forever. Count on us to be following along with pride. Thanks for your bravery, Sam! The world really needs more people like you!
Thanks Megan. I’ve been truly touched by number of responses to my blog. I guess I’ll have to keep writing now! Next topic, love and marriage.
Thank you, Sam for sharing your unique reality. It is good to know you more. Your intelligence and kindness have always been who you are. The underlying struggle and work of living who you are have resulted in a fine man who has lived his inherent loving kindness. Quite right, Asperger’s does not define you, you define it.
I resonate to your truth with the reality of my having bi-polar disorder. Long, very long before I knew what I had, I knew I was different. The diagnosis I received was such a relief, since it explained so much of me to myself. It has taken years of hard work to be successful at accepting and living with what I have. I have succeeded and surprised myself by being grateful for this unique array of strengths and struggles that have accompanied me all my life.
Thanks again, Sam.
Thanks Maestro, It sounds like you and I share the feeling of finally understanding things that for so long made no sense. I’ve learned, or at least I’m learning, to embrace who I am, as I am.