Living While on the Spectrum

Living While On the Spectrum

I'm having a tough time working through all the different thoughts in the world, and It's getting harder by the minute to guide my children through all the misguided opinions of others. How do we teach our children to be confident in their authenticity when everyone seems to be biased? I was always able to understand both sides of an argument, and because of that, I lived in a constant state of confusion for a long time.

I have Autism Spectrum Disorder and just found out at age fifty. It took almost a year to process the diagnosis, but gradually all the puzzle pieces suddenly began to fit. I finally had answers after years of uncertainty. Crying tears of joy came from finally understanding the behaviors I've explained away throughout my life. I'm high-functioning but struggle with terrible anxiety. I'm socially awkward, and still can not tell when mocked. It's not until I have replayed the scenario in my head, which could take hours, days, or even weeks to process the whole conversation. Not telling if someone has good or bad intentions has crippled me; I can only explain through writing. I have never been able to express myself thoroughly when speaking. Everything I say comes out wrong because my tone is direct. I've been this way since a kid. Not having the filter most children developed by a certain age led me to get popped in the mouth a lot for misspeaking. Many still don't understand and take my directness as being rude.

Usually, I'd realized this after it's too late. Facial expressions would change from normal to confused, and sometimes I'm met with anger. Sometimes I would get it right away, and other times, I would completely miss what the other person was trying to say. I had to figure out how to communicate effectively. Being articulate wasn't enough for people. Studying others' wasn't enough either; But, when I write.. my thoughts always seem to flow out of my head onto the paper. Learning I suffered from writers' block forced me to dig deeper for an explanation. After finding out it was my fear of violating those closest to me. I made sure it was okay to share our story before starting this journey.

I grew up in NYC housing, never fully understanding what it meant to be limited. I can safely say I lived inside my head, and whatever I wanted to do, I did. It drove my mother insane simply because she could not control me. I was too forward-thinking for my mother, and it had put a tremendous strain on our mother-daughter relationship. When I met my husband, I was completely ready to settle down and raise my own family. I became hell-bent on proving I was worthy of love even though I didn't believe it for a long time. My husband and I moved the family to the suburbs and realized we were amongst many who were comfortable in their way of thinking. I didn't know my kids' school was in a town full of systemically biased people. Everyone I met shared their opinion without really understanding the struggle of someone like me who is atypical and trying to maintain in a neurotypical society. Heck, I didn't understand.

I had a strict upbringing. Everyone I knew had thoughts of the same things, worried about the same things, and strived for their idea of a good life. I never had a problem with understanding that. I had a problem playing along. There're so many memories etched into my brain going as far back as age three, but by age seven, I had a sense of self and an understanding of how the world works, or so I thought. While journaling as a child, I was told never to write your thoughts down because it can hurt you. Of course, I didn't listen. I wrote my feeling down in my journal, and it got into the wrong hands. Everyone knew my secrets, and my mother gave me a lecture about trusting the wrong people. This time her words stuck, and by internalized this lesson, I decided never to write in a diary again.

I decided, Instead of writing my feelings in a diary. I started to watch movies that related to my life. The movie "Carrie," (played by Sissy Spacek) was one of many movies I described as a preteen. I would watch this movie over and over again, memorizing every movement and every spoken word; then, I would rewrite it from memory, as if I were making a play so that I could get my classmates to reenact the scenes during Gym. I could not connect with a lot of people as a kid. I was bullied and disliked, but I figured out a way to get everyone to come together when I wrote. No matter what others thought of me, everyone wanted a part in my play. Maybe it was out of curiosity, Or perhaps it was because they hated Gym as much as I did. But It didn't matter, because all I wanted was acceptance.

There weren't any deep understandings of trial and error as a child. I just knew I had a very vivid imagination, and because of that, film, music, reading, writing, and real-life experiences was how I learned. Being drawn to beautiful people and places came from my fifth-grade teacher Ms. Roman. She would read different novels to the class, and this opened my world. From then on, I read any and everything, from teen novels to teen magazines. It would later put me on a path to authors I love and still follow to this day—my more favored authors are Steven King, Jackie Collins, Maya Angelou, Mario Puzo, etc. I connected to movies through some of the novels I still enjoy reading. Sometimes I will read a book then want to own the video. I'd watch again and again—all the while taking in the many differences. Often, I wondered why the book gave you more material than the actual movie. After a while, I didn't care. All the pressures of life just fell away when reading a good book or watching a good movie.

Music, on the other hand, was discovered at age seven. We just moved into a new apartment, and mom had me unpack her record collection, which was extensive. I found Carol King's Tapestry album, memorized, and wrote the lyrics down. I'd sing to my cousins, or anyone familiar with her music, that didn't mind a little girl belting out notes as if she lived the songs. I was young, but yet I felt everything so intensely. I now know that it's called "sensory overload." My mom explained it as being overly sensitive, gullible, and naive. I'd get this answer every time I asked her about why people acted the way they did. She replied, "that's the way of the world." I never understood until I had children of my own.

The teasing and bullying never ceased because people shunned what they did not understand. Where I grew up, explaining myself to others became second nature. Whether it was with friends or family, I wasn't completely free of others' rhetoric. Until we moved to the middle of nowhere, where I thought neighbors were scarce. I was wrong; After moving to a rural area, I came face to face with more biased rhetoric. My saving grace was and still is that I love being at home in my own space, doing things that make me happy. Whether entertaining myself or others, I am in my house. Safe from outside influences. If forced into a situation unprepared, anxiety takes over, then there would be screaming matches, meltdowns, and breakdowns followed by uncontrollable crying or anger. Still, I would get up and pull myself together because I have to take care of my children. My falling apart does not help them, but it still happens. I have no help; it is all on me. My husband could never help me with anything the family faced because he could only concentrate on the financial aspect of rearing a family. I'm responsible for everything else.

I am a logical thinker; I speak and respond in a logical sense. The way I talk isn't robotic, but very articulate. Because I appear reasonably intelligent, this confuses many until I'm in a social setting where you will see where I start to struggle. When trying to follow along, my thought process becomes perplexed; then I begin to mimic what I am supposed to be doing. I learned how to interact with others by recalling something seen in a movie or on tv without realizing I communicated through metaphor. Being able to pull a memory from something seen helped me maintain a conversation so others wouldn't catch on. I have done this my entire life up until my diagnosis.

Fitting into society's' norms made my life very difficult. I began to study people even more, and it didn't matter where I got my knowledge. My exposure to Greenwich Village came when I was thirteen. While shopping with my godmother, I realized the atmosphere was uninhibited and was drawn to it instantly. When old enough to travel alone, I spent most of my time there because no one cared if you were different. I am an adult now, trying to survive in a struggling marriage while taking care of my children, who all happen to be on the spectrum. Getting therapy was not the logical solution at first because I thought I worked through the kinks that confused me throughout my life. I've been married for twenty-five years, and the only thing that concerned me was maintaining our family. Finding out I, myself, was on the spectrum was not expected. I kept asking myself, " How could I be on the Autism spectrum when I've managed to create such a great life and family."

I went to therapy for anger management. After tapping into what was making me so angry, I found out I had Autism Spectrum Disorder. I gained so much clarity, and everything fell into place. I've always researched what I didn't understand. This diagnosis was no different. I watched documentaries such as 'Too sane for this world' and read countless articles about others' varying levels on the spectrum. I struggle with extreme Anxiety, PDA/EDA, OCD, and ADHD. Typically this would disturb the average person receiving this news. But, I was so relieved, I honestly thought I was losing my mind.

The truth is, I've been living with all of this, continually explaining away things I didn't understand myself. I was walking through life, accepting the fate handed to me. To put a name to the madness after so many years gave me the freedom to be myself. I felt I could not be myself for many years because we live in a world that rules through ostracizing others' shortcomings. That "rule" is the root of all my anxiety. I now know I was masking to get through the day-to-day. I often wonder what will become of my children and all the undiagnosed children who have to walk in this same world that doesn't accept you when you are different.