Upon receiving my diagnosis of a life long disorder at 58 year of age, I’ve had almost that many years of life experience to review. It is an ongoing recollection of past episodes and how they relate to my diagnosis. I was filled with relief upon given the why, Autism Spectrum Disorder (ASD), of my behavior that was not in step with my companions. Knowing it had a name took away the long held notion of being a “being” from another world.
On the bright side, I believe there is a strong connection between my strengths and talents with ASD. My need for routine was useful in getting me to work on time, daily chores done, and bills paid on time. 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.”
However, there is the dark side. After a few weeks of celebration of being given something that declared I wasn’t crazy, I am reflecting, too, on the dark side. It isn’t all positive. If it was, the autism spectrum wouldn’t have “disorder” at the end of 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 blimp on my life’s screen. It is, too, a big deal!
I wonder if I hadn’t had ASD, would I have had some grandkids to spoil like so many of my peers have. I have a better understanding of why I don’t. So I will not ever known the pain or joy of childbirth or the birth of my child’s child. If I do down the path of “what might have been if I didn’t have ASD”, I am headed down a path with a depressing dead end. I tell myself no one has it all.
Verbal instruction is hard for me to take in and process when given little time to complete the task. I now know why that is, but it doesn’t take away the challenge. When given me a list of verbal commands, my inner panic button goes off. I have to ask for a repeat because the sound of the panic button drowns out at least the second half of the instuctions. If I act on it 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 and lights are annoying. I don’t mind hearing music as long as it is my music. 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 positive is there are ways to tackle the dark side. I’m thankful for the one dear “BFF” girlfriend I have. No big deal that I don’t have a host of girlfriends. When given a list of verbal instructions, I try to ask or repeat what I believe I heard the person say. I sleep with an eye mask to avoid the light of the digital clock and sleep to the sound of the air purifier to block out the noise of pitter and patter of feet or of my own heartbeat. 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.
It is both bright and dark living on the autism spectrum. That’s true as well for those not living on the spectrum. It is an old saying that one has to take the sour with the sweet. But oh, I am so thankful for the sweet.