Monday, April 1, 2019

My Life with ASD




It was 1991.


I was in college, learning to be a broadcaster. The school year was drawing to a close. My roomate at the time invited me to a "party" in the cafeteria and said I should come, that people in my class actually wanted me there. That was a big surprise because up to that point, I hadn't been invited to much of anything. I was young, socially inexperienced and frankly had always encountered difficulties and challenges in larger social situations. I was different and the cool kids made sure I knew it. With name-calling. With shunning. With gossip and rumors. But that was then. It was a new day. I had been invited to a party and was excited. I felt that maybe, just maybe, my classmates had warmed up to me by year's end.


But I was fooling myself. I was wrong.


When I arrived, the cafeteria erupted in laughter, catcalls and cheers. Before I could exit, another classmate stood in front of me, holding a cream pie. Looking straight into my eyes, in a cold, mocking voice, she said:


"You deserve this. We don't want you here. Nobody here likes you."


As both teachers and students looked on, she then forcefully shoved the pie in my face, twisting it back and forth.


It was good that she managed to smear it so well.


It hid my tears, my hurt, my anguish.


Maybe it didn't seem so terrible to others, but it did to me.


Her words were so mean, so harsh, that no one in the cafeteria laughed. It was just a stunned quiet. I walked out of the cafeteria, shoulders and head down, wiping off my face in humiliation as no one clapped, or laughed, or even spoke. There was just this embarrassed silence.


It was one of the worst days of my life. It hurts as much now as it did then, nearly 30 years ago.


I had been called many names in Junior High and High School, largely due to my smaller stature, my awkwardness and due to how I'd freeze up or zone out in stressful situations. I was a shrimp, a space cadet, nerd, geek, burnout, wierdo, you name it. I was bullied a lot and had hoped that maybe it would end with college.


It didn't.


Despite all the bullying I'd experienced in grade school, they all paled in comparison to that one fateful day. They were easily the most hurtful words I'd ever heard. They broke my heart, crushed my spirit and utterly destroyed my confidence.


For years.


Somehow, despite how mean-spirited and cruel the act was, I felt it was somehow my fault. I wasn't like other people so maybe I deserved it.


It wasn't true, but it would be decades later before I truly believed that.


I desperately didn't want to back to school the next year so instead I somehow managed to find a copywriting job. I hoped for the best in that position - that they'd understand me. And I got lucky. I had a boss that knew something was a little different with me. He didn't know exactly what - and I didn't share it with him - but he was patient and kind. And because of that, I flourished. I loved that job. But it was radio, which tended to be in constant transition. It wasn't long before I ended up across the country at another station. I was lonely there and very misunderstood. I had no family, no friends, nor any close colleagues to soften the blow.


I was adrift and I couldn't figure out why.


Even after I came home, I struggled. In other jobs, I seemed to put people off without understanding why. I never got invited to parties, couldn't seem to keep a conversation going, and wouldn't know I'd annoyed someone until it was too late. Certain sounds, textures, and bright lights were totally disorienting. I was - and still am - very locked into particular routines and would get extremely anxious if things didn't go according to plan. I was constantly overwhelmed, burned out, stressed, and angry.


Then along came the music industry.


My one of a kind brain gifted me with the ability to play guitar, write songs and sing. And it served me well. Bands wanted me, girls started to actually pay attention to me, and maybe for the first time ever, I felt almost normal. Well, on stage, anyway.


In the music business, I found a way to cover up my eccentricities - even celebrate them to some degree. I could be scattered, impulsive, manic, blunt, and obsessive while not looking out of place. But drugs and alcohol came with the package and I used them night and day to hide who I was and blend in. I became a hardened, darker, "cooler" version of myself. It worked, but it was also a trap. And one that was hard to escape.


To keep up with appearances, the problems persisted and got worse. Drinking and drugs became ingrained habits that were hard to lose. My health suffered. Depression and anxiety kicked in. I grew increasingly self-isolated. As years went by, I could see the patterns of struggle. And I always felt utterly hopeless in changing them.


Seeking some kind of relief, I began to explore Mindfulness to try and resolve some of these issues. In that journey, I began to see that my mind was wired differently than others. I recalled how as a child, my educators saw the same anomalies I was beginning to clue in on. I remembered how all those years ago they tested me and came to believe I possibly had ADD, ADHD or a learning difficulty. The only thing was, the pills that normally worked for these didn't for me. Seeing how it was the 80's, that's as far as the search got.


Instead, I simply got lumped into a category of "hyper", "spacey" and so on. It created a lot of bullying situations as I didn't have the means to defend myself. It took many years to realize I didn't deserve to be treated so unfairly.


As my twenties rolled into my thirties, I met my current partner. She knew right away something was different about me. But even then, it took me years to finally accept that I was likely on the spectrum. I credit her with helping me finally see the light.


It was into my forties that I finally bit down and got the diagnosis. It took a lot of time. A ton of effort. And most of all, it took loads of self-advocacy for our mental health system to listen. But I was determined. By that time, testing had advanced significantly and I was able to get a conclusive answer from multiple medical professionals - that I was a high-functioning autistic.


That diagnosis opened the world to me.


I knew, once and for all, that I had Asperger's.


At first, I didn't want to accept it. However, I slowly came to accept it. With this diagnosis, I found answers to many, many questions I'd had over the years about who - and how - I was. Why I was repetitive. Why I struggled to read faces. Why I often didn't understand sarcasm or dry humor. Why I struggled with certain social skills that everyone else seemed to be born with. Why I got so obsessive about certain things. Why I would "shut down", "zone out" or be extremely anxious if there was too much going on around me.


With help from my partner, I took on the responsibility of learning as much as I could about being on the spectrum. And from that day onward, I began to see a great deal of positive change - not only in myself, but in how others perceived me. People engaged with me more and I felt that they were more comfortable around me, too. It was a relief for me to know I was less of a burden on others.


My band, The Divorcees, also proved to be helpful and supportive. They're my best friends for the best of reasons. They've got my back. And I love them for it.


Also, as a Mason and Shriner, I've found a network of caring, compassionate men who always do their best to be in each other's corner, including mine. The Fraternity has been a huge blessing in my life, providing focus, resources and a safe space to improve myself.


Since coming to grips with my AS, I've become more engaged in the community, improved my relationships and overcame hurdles that were preventing me from succeeding in my career. I am currently enrolled in plumbing school - something I was terrified of doing for decades out of the fear of reliving the bullying and humiliation I encountered all those years ago. I have good, supportive friends in class and while I'm not a perfect student, I am passing all my courses and am well on my way to entering the Plumbing Trade.


What a journey it has been - from getting cut down and shamed as a child, ridiculed and invalidated as a teenaged freshman, from being an angry, frustrated, confused, out-of-control young man to finally being a 47-year old man with great friends, Brothers, family and a stellar partner who loves me for who I am - odd wiring and all.


For those of you on the Autistic Spectrum, I urge you to work with who you are. Be easy on yourself but don't hide away from what you're both able and unable to do. Don't isolate yourself. Learn about your special mind and see it as a wonderful thing. Share it with others. Know deep down that you - yes YOU - have value. Don't wait as long as I have. Accept help when you need it and seek it out relentlessly. But most of all, just be yourself and know that there is absolutely nothing wrong with you.


You are - as I am - on the Spectrum.


And that is a wondrous place.

2 comments:

  1. My dearest Alex, I applaud you for speaking so truthfully about your past experiences. It breaks my heart to know that some people will hurt others deliberately just to elevate themselves, but I strongly believe that KARMA'S a bitch and when the universe decides to right itself, you can be sure that their day will come! You know Alex, not everything in life fits into a box. If you were a gift, you'd be difficult to wrap, but you would be the first one I would like to open under the XMas tree. Why, because you are unique and one of a kind. To my eyes, being different, is better than being just a regular Joe and your uniqueness is what makes you..YOU! You are a kind gentle soul, a very talented musician, a writer, a story teller, a great nephew with a heart of gold. I can fully understand your obsessive/compulsiveness, it must be a family trait, because I know personally how it can drive you crazy. Thank God we have outlets like music and art and understanding partners to help us work it all out. Don't ever change who you are, because to we luv you to pieces just the way you are. Luv you kiddo,

    Aunt Pauline XOXOXOX

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  2. Thank you Alex for sharing your story with everyone. You never know how many people need to hear this or are struggling with the same thing or similar. I applaud your courage through difficult times. Never give up. Fight the good fight and be the person you want to be.

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My Life with ASD

It was 1991. I was in college, learning to be a broadcaster. The school year was drawing to a close. My roomate at the time inv...