Speaking Up For Us is excited to announce that Marco Orlando, from Brewer, will be sharing his writings with us on a regular basis.  Marco is currently the Chapter Rep for the Bangor Chapter and is an active member.  You will find his writings here on our blog with the tag “Wrestling with My Mind.”

 

 

“IN THE BEGINNING . . .”

by Marco Orlando

My mother tells me from the very beginning that she could sense there was something a little different about me. The day I was born, October 15, 1985, she noticed that I didn’t particularly enjoy being held or touched, and she didn’t really know why. Since that day, little things started adding up in her mind, from hooded sweatshirts I would never take off no matter how hot it was to Mickey Mouse toys I would twirl in my hair. I didn’t initiate speech freely unless I was reading words off of signs we would pass by on the side of the road when my family was traveling. I broke my collarbone at a babysitter’s house when I was two and didn’t make much of a fuss about it, even though I have no memory of this incident.

My mother and father wanted to know what was going on with me, so they took me from doctor to doctor throughout the state of Maine, and each time, they ended up with more questions than answers. After each examination, the doctor would say to them, “I don’t think I’ve seen anyone quite like your son before.” This was during the late 1980s when autism was only beginning to become understood by the general public, thanks in large part to the popularity of Rain Man and Dustin Hoffman’s award winning portrayal of Raymond Babbitt in the landmark film.

It was at Children’s Hospital in Boston that my parents finally caught a break. Doctors there gave me a diagnosis that has long since been discontinued called “Semantic Pragmatic Language Disorder.” It was not in any way connected to autism spectrum disorders of the time, or the autism spectrum as people know it today. Doctors there just assumed that I was having trouble talking, and that it didn’t appear to be related to anything going on in my head. But at least it was something, and something was better than nothing in the grand scheme of things at the time.

I did not get a formal diagnosis of autism until I was 14, about ten years later, from Dr. Tim Rogers. It was a long time coming. Finally, some definitive answers. There was an explanation for why I am how I am. I know what autism is, I have a general idea of what I have to contend with every day, and I know what I need to work on to get to where I need to be in life.

Autism can be challenging. I will freely admit I’m not always so easy for other people to deal with at times because of it. But that’s not to say I’m a lost cause. Far from it. I have approximate knowledge of many things. I’m a wordsmith, I have a way with words, I love to talk. I love music, I love to perform, I love having an audience. I like to make people laugh and I like to entertain them. I won’t downplay the issues I contend with, but I would like to think that I’ve been able to manage having autism as well as I have for as long as I have because (1) I’m in tune with how having autism affects me day to day, and (2) I don’t let having autism keep me from living a full productive life and doing things I want to do.

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