Finding Myself By Finding Out I Have Autism -- at 50
On the cusp of my 50th birthday, I learned I have Asperger’s syndrome. Actually, there is no Asperger’s syndrome anymore according to DSM-V; so technically, I meet the diagnostic criteria for being on the autism spectrum. That is to say, I have autism, or I am autistic. Some on the spectrum prefer “have autism;” others prefer “autistic.” I prefer neither. The functional labels that best describe me are wife, mother, and business writer. Autism is how my mind works. Autistic is not who I am.
I learned I was on the spectrum by accident. My son is autistic. During the worst of one of autism’s many storms, I pulled my mental health records to pass on to my son’s doctors, hoping there was something useful there that could help treat my “Leading Man #1.” There it was on Page 1: “Patient meets the diagnostic criteria for Asperger’s syndrome.”
This discovery was not earth-shattering. It was simply another bit of the self-knowledge I had been collecting since I turned 49, asked myself who I wanted to be when I turned 50, realized I already was that person, and started living my life as that person. There’s a popular term called “masking,” or acting like you believe the rest of the world wants you to act. Up until my 49th birthday, I did a lot of that.
What was shocking was the discovery that some people in the autistic community believe autism is not a disability. To me, it most certainly is. Every time some simple thing frustrates me and my entire brain shuts down is disabling. Every time I realize I have missed a critical social cue and start to slide toward depression is disabling. Every time I miss a “trigger” and lose my temper is disabling. Every time I feel overwhelmed and have to retreat from something I enjoy doing is disabling.
So to me, autism is a disability, and yes, I am disabled. I force myself to move past the brain-shut-down-induced paralysis, the crushing bouts of depression, the roiling anger and the urge to hide with my head down. Fortunately, I am able to do that. That’s what years of living without an autism diagnosis gave me. I did not know I was disabled, so I forced myself not to be.
Instead, I forced myself forward on what felt, most of the time, like a zig-zagging path along a jagged precipice. I was rarely happy. I could rarely sit still. I was always completely discontent with myself. I felt awkward and alone. I had a hard time making and a harder time keeping friends. I was constantly frustrated because I could not understand, nor ever force myself to behave appropriately in society. To others, I seemed like a drama queen, or a “psycho” (thanks to those meltdowns), or awkward. All of these things caused me to torch bridges and repeat the same mistakes over and over again. I hit rock bottom, pulled myself up and hit it again.
I lived like that while building a successful career doing what I love: writing for business. I lived like that fighting like hell to make sure my son didn’t have to. I hated living the way I did. I didn’t understand what was wrong with me.
Turns out, the only thing wrong with me was that I didn’t know me.
About a month after the Asperger’s discovery, three months before that ominous 50th birthday, I finally started figuring it out. I was lying on a yoga mat in a meditation class I had signed up for purely on a whim. When, after multiple tries, I couldn’t focus on the meditation, I gave up and stared at the ceiling in the dark. That’s when I started to think. That’s when I started to learn about myself. I kept going to meditation classes until I learned how autism disabled me, and how I could live with and change that.
Acceptance is always the first step forward.
I will turn 51 in two weeks. Life is a lot different now. Sometimes the autistic spectrum screams so loud I still freeze like a deer in the headlights. These days, instead of being stalled by it, I refocus myself and move forward. I still feel awkward at social gatherings. I am getting better, though. I no longer make the same mistakes over and over again. My recently built bridges are still intact. I no longer feel like I don’t fit in anywhere. Actually, I no longer care if I do or do not fit in. Fitting in is boring.
Being autistic and disabled are part of me. They do not define what I am or who I consider myself to be. What does define me are all the things I do consider myself: wife, mother, writer, dog’s human.