BITTERSWEET: The Day I Was Diagnosed with Autism

BY M.S. ROSE

I did not realize that receiving my autism diagnosis would be the biggest relief of my life as well as the thing I felt I would have to hide from the world. The most influential event in my life is the day I was diagnosed with autism because it changed my life forever. For me, autism is like being a part of an orchestra playing the Dance of the Sugar Plum Fairy and you have the sheet music for Beethoven’s 5th Symphony. You are proficient in playing the symphony, but you are criticized for playing the wrong music, yet you are clueless as to what your error is because this is the only sheet music you were given. Unfortunately, while most people with autism are diagnosed at an early age, I was not. I was diagnosed at age 10, so I had less time to re-learn how to do things and receive interventions.

When my parents decided to move our family from Oregon to Indiana, they found many more resources here for children with neurological disorders. My brother was diagnosed with autism at age 4, and he became the primary focus of my parents at the time.

Once my brother was properly diagnosed and interventions were started, my parents were able to focus on me. I had several typical characteristics and symptoms, but my parents did not want me labeled because I seemed to do fine academically and they were already devastated by my brother’s diagnosis. However, despite my academic success, I screamed basically all the time, was highly sensitive to sounds, would only eat mac-n-cheese, and was considered a “bad kid” by other people. My sound sensitivity was so bad that the clanking of silverware together caused me to grind my teeth. So, my parents took me to a neuropsychologist for testing. I went through an extensive battery of tests. They included tests for memory, hearing sensitivity, questions regarding my social interactions, and my emotions. The results showed without a doubt that I had autism. Autism is considered a spectrum disorder and I fit the “higher functioning” end of the spectrum. This is not a term that I align myself with because it makes me feel like I am expected to be “better” than the “average” person with autism, but it is the way it is described typically and medically. So, I had to adapt to my new life.

After receiving my diagnosis, I became more critical of my mannerisms and actions. This included “normal” things such as the way I spoke, which was in a monotone voice, the way I wrote anything, and the fact that I was very blunt when expressing my opinion. I learned to mask my symptoms for fear of falling into the stereotype surrounding people with autism. The typical stereotype is either an individual who is completely helpless and unaware of their surroundings, or a savant who has amazing abilities and a completely analytical brain. I am neither of those. Unfortunately, people I have encountered often project one of those stereotypes on me. Some have even tried to separate my autism from me by claiming that I am smart only because of my autism, and not because I am actually smart despite my autism. I am not a helpless person, and I am not a savant. I still struggle with masking my identity, but that is based upon which characteristics I am either trying to share or hide. I am just me, who is an individual who happens to have autism and is not ashamed of who I am.

Being diagnosed with autism changed my life in a bittersweet way. I am proud of who I am, but still struggle with accepting all that the autism diagnosis encompasses. I know that I do not fit into the typical stereotype, and I embrace that.

I could have chosen to write about other things in my life, but wanted to share the story of my autism diagnosis because it is paramount to who I am. Sharing other parts of my life never feels as authentic as talking about my autism diagnosis. When you have been in the orchestra forever, you learn how to adapt and play your own tune.