Upon receiving my diagnosis of a lifelong disorder at 58 years old, I’ve had almost that many years of life experience to review. It is an ongoing recollection of past and present episodes and how they relate to my diagnosis. I was relieved at having an explanation of why my behavior is not in step with my companions. Knowing it had a name took away the long-held notion of being from another world.
On the bright side, I believe there is a strong connection between my strengths and talents with autism spectrum disorder (ASD). My passion for writing has taken off since my diagnosis because I know have a story to tell. This passion is one thing I have ASD to thank for. My tendency to hone in on details instead of the big picture was an asset to my once-held favorite job as a library cataloger. I fondly recall the one who taught me cataloging telling me, “You’re a natural.” Now I know she was right and why.
However, after weeks of celebration of being given this diagnosis, I am reflecting, too, on the dark side. It isn’t all positive for me.
An everyday challenge for me is verbal instruction. It is hard for me to take in and process when given little time to respond to a list of instructions. I now know why that is, but it doesn’t turn off my inner panic button. If I act on the instructions without questions or clarification, the odds of having heard it right are not in my favor. When I get it wrong, I feel a crushing blow, and it seemingly takes forever to get the memory of it to stop replaying in my mind.
Sensitivity to certain noises is annoying. I don’t mind hearing loud music provided it is my music that’s playing. I don’t know why someone’s stereo in the other room or next door can make me feel like a cat whose tail got caught on a chair leg.
A meltdown doesn’t walk in. It breaks in! It can come from out of nowhere. For me, it often breaks in at night. I wake up and feel trapped in my bed. The pillows and sheets are attacking my skin. I get up and throw the pillows across the room. I know what’s going on, but my knowing doesn’t stop it.
The reaction of those in my inner and outer circle has been mostly positive, but some responses were unsettling. Some respond with, “Well, most people probably have at least a little autism.” Maybe they were trying to make me feel better, but autism isn’t the common cold. I take my diagnosis as a life-changing event, whereas some seem to suggest it is a blip on my life’s screen. I also get the response, “But you look so normal.” Well, there are countless disorders that don’t have neon signs attached to them.
I realize if I go down the path of “what might life might look like now without ASD,” I am headed down a path with a depressing dead end. I tell myself no one has it all.
The positive is there are ways to tackle the dark side. When given a list of verbal instructions, I try to ask or repeat what I believe I heard the person say. When invaded by a meltdown, I try to sit somewhere, take deep breaths and rock… and say a little prayer too until the storm passes.
For me it is both bright and dark living on the autism spectrum. But that can be true as well for people not living on the spectrum. It is an old saying that is so true that one has to take the sour with the sweet. But oh, I am so thankful for the sweet.
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