My Life with Autism - A peek into the life of IBabyMaestro

My Life with Autism - A peek into the life of IBabyMaestro

Posted by Ibabymaestro on 2020 Apr 2nd

A peek into the life of @IBabyMaestro

- Link to the YouTube Video -

Where to begin with my story, of the tests and trials I have and still am overcoming, is a challenge. But then again, most things commonly associated with everyday life functions are a challenge for me, whereas for those who don’t deal with autism personally may not experience most of these hardships and struggles. Not only do I see them as struggles- the battles I face daily in attempting to socialize, perform daily routines and functions, interactions with my various senses that are connected to the world around us, etc., but I see them as blessings and opportunities for growth, enlightenment, and passion. Stephen Shore once said, “It is sometimes said that if you know one person with autism, you know one person with autism.” Autism can come in many forms and shapes, and not one person with autism is like the other. I can truly testify to that as I am truly unique for anyone dealing with autism and struggling to integrate into a relentless and demanding society which calls for conformity to “the norm”. What is a norm for others is not norm for me in many scenarios. For example, when I attend college classes, I must have a way to record any lecture classes, as well as have a professional note-taker to help me with recording the materials being taught for that class. I have development disorders within my spectrum that disrupts my ability to comprehend and retain various forms and amounts of information that I am trying to grasp. Most students can sit through a lecture class without that kind of help and be able to retain that information in less time than it takes me.

Another example is my ears. No, not the size nor the shape of them, or even how my elephant ears look, but to the sensitivities of sound, volume, and pitch. I simply can not deal with high pitched vibrations in the air around me, or certain percussive sounds interacting within my environment, as they can cause physical and mental pain to me and in turn, causes me to react in a negative way. The negatives can be me screaming and rocking back in forth with my arms and hands around my head; they can be throwing a tantrum, throwing things, or running away; it can be anything that causes me to find a way to deal with the immediate problem at hand. I am not always aware of what’s going on or what I am doing when I have an episode initiated by certain sounds. This is how I react sometimes to adverse situations unfitting for my mindset. This is just another example of how autism can shape a person, and how it can distinguish one with this condition from one who does not.

One other example that’s not as dramatic is the intellectual side of my spectrum. I’m extremely high functioning, even when I was first diagnosed with ASD (Autism Spectrum Disorder) and Asperger’s Syndrome. I excelled in creative arts, math, and geography/history. I was part of the gifted and talented education growing up and was given challenges that matched or pushed my intellectual abilities. I had a strong passion for computation and creating things and was mesmerized in these fields of study. The grades proved it as I was a straight A student throughout grade school. One thing that was used to bring out my communication skills was computers. I was attracted to them and figuring out how they worked, how to run various programs, games, and simulations, and anything dealing with the sorts. Honestly, anything with games, whether board/card games, video games, or mind games, I had an extreme focus and passion for them. That’s one part of me that is a characteristic of autism; an extreme interest or focus on a subject or field. I could tell you almost anything about games and how they worked back then and invent new ways on how to play them. Although I rarely wanted to implement those changes as alterations always triggered me, I loved inventing new ways to play games in my private time.

Growing up with autism not only exposed my limitations and gifts but opened the gateway to persecution and pain from my own inner circle: family and friends, and my classmates. I even had difficulties with therapists and doctors strangely enough. Ever since I was diagnosed with autism, I was treated very differently than anyone else by everyone it seemed. My parents abused me multiple times and didn’t really believe or consider my disabilities or mental state with autism and continued to punish me for anything they saw fit to punish me for, whether that be physical, verbal, or mental abuse. I lived my entire life in fear because of my former parents and never understood why they would treat me this way or that. Nor did I understand my own actions or what autism was then. An even more interesting fact is that my folks never told me that I had autism until I was past the age of 16. Oh wow, that’s why I seem different, I thought to myself when they told me that. To be honest, I rejected that notion that anything was wrong with me or that I had autism for a while because of how autism was view by the society I grew up in. It wasn’t until much later in my life that I began to truly reflect and realize all the signs of my spectrum disorder and see that I truly had autism.

What were some of the signs of autism I had when I was very young? Apparently, I had very limited eye contact with anyone deemed human. I was extremely quiet and never spoke to anyone. I only smiled at rare times and just looked around or at the side of the person. I had zero communication or interaction skills, no gestures of any kind, and hardly any acknowledgement of my name when called. I neither imitated nor repeated anything someone spoke towards me or gestured in efforts to communicate with me. I always preferred to stay alone as being around others scared me. I did not exactly know how to communicate with others as I had speech delays and stuttering problems, nor did I understand social cues or common social skills. When I finally acquired some sort of language skill, I was repetitive in many words I spoke. I always rocked back and forth and hit the back of my head against anything that felt hard enough and comfortable to my head. I had nervous habits with my hands that I don’t know how to explain, and always made humming sounds that I can neither explain nor describe to you as well. I had very limited interests in anything, like computers and math, and resisted any sort of change in my daily routine or anything that changed around me. I hated many different sounds, tastes, textures of various materials and surfaces, including certain clothes, and I had extreme sensitivity to lights and brightness.

Autism is a unique and sometimes difficult condition to understand. Even I myself don’t fully comprehend it and am still learning about myself and autism daily. From what I’ve experienced, I know that I have or had difficulties with skills such as organization, thinking about the bigger picture, planning things ahead, staying focused, and many other things. I had troubles with non-verbal communication and what appropriate communication was. I always paid attention to the smallest things or had to organize or reorganize things that made me comfortable. I was very simple minded however when it didn’t come to things that wasn’t an extreme focus of mine and couldn’t think in complex terms a lot of times. I had to focus on one thought at a time, or else I could easily get confused. My mind works in different ways that others and if it gets sidetracked or interrupted, it would be like knocking dominoes down or breaking the middle of an assembly line that disrupts the entire process. One other thing I deal with is the ability to understand and identify the thoughts, feelings and intentions of others. Individuals are able to discern how someone else is feeling or thinking. I may not always realize if another person’s behaviors are intentional or unintentional. This challenge tends to mislead others around me or interact with me to believe that I don’t show empathy towards them or their situation, or fully understand them. I have this trouble quite often and it is something I’m continually working on.

Other things that came about as a result of getting diagnosed with ASD Is being diagnosed with anxiety disorder, PTSD, ADHD, gastrointestinal issues, incontinence, and others. I wasn’t diagnosed with these all at one time of course, but over time throughout multiple diagnoses of ASD in my life. The one that probably affected me the most was incontinence because I had to wear diapers throughout the first several years of my life and got made fun of by my peers, my former parents, and anyone who wanted to look down on me or bully me. I was bullied a lot throughout school because of my differences and my mental state suffered greatly because of it. However, I never let it get me off focus of my goals and continued to pursue my passions.

Growing up in a very strict, Christian household, I was very limited in activities and what I could do or say or think. I was extremely sheltered and had very limited interaction with the outside world. I hated home and never enjoyed going home after school or daycare or anything for that matter. On occasion, things would be great, and my former family and I would get along fine and have fun. But most days, I lived in constant oppression and fear because of what my family could or would do towards me. I strove to maintain straight A’s and be on my best behavior in school, but perfection was what was expected out of me and would often get punished for not meeting their ever-increasing standards. Anytime I had an accident on myself because I had no idea I had one, I would be severely punished for it in ways I wish to not describe as it’s hard for me to even put this in my blog right now. I would get made fun of by my family for stuttering and was looked down upon for pursuing a career in music. What you must understand is that music was the gateway to opening communication and the skills associated with it to me. Music therapy helped me a lot and got me to start speaking and communicating words and sentences, eventually creating conversations and slowly integrating me into society. Music was the greatest passion I had, besides my Christian faith in Christ, and it was my only escape from everything I experienced. I had a deep passion for classical music, like symphonic/orchestral music. I listened to it every day I could. I wanted to grow up and be a musician and conductor, and I eventually did become a musician in grade school and throughout college. My family didn’t support me doing music for a career, and as the abuse and non-support increased, I had to make the biggest decision I had made in a long time; leave my family. It was the only way I was able to be set free and pursue my passion for music and receive the help I could get for my deficits and gifts with autism. I struggled on my own greatly as I had to learn basic skills on how to survive in this dark, cruel demanding world and I had suffered multiple bike-to-car collisions that put me in the hospital, broken my back multiple times, and delayed my college education. But my passions remained, and I learned to create a family with the closest friends I have in my life. We all look out for each other and that’s what mattered the most to me. Without my faith, my passion for music, and my family of friends and the community that has inspired and help me throughout my life, I would not have overcome some of the obstacles I have faced as a black American with autism. Doctors literally gave up on me when I was young and said there was no hope for me and that I would be dependent for the rest of my life, never able to fully communicate with others, and would not survive in this life. I went through abuse and neglect from peers and family, and life tried to tear me apart while I continuously fought and stood my ground. Let my testimony be yours. Don’t let anyone, nor anything or society stop you from achieving your dreams, obtaining what’s yours, and being the unique you that you are. You must believe in the beauty that you have and being different is ok! I know I am different and am proud of it, and I will continue to let my differences positively change the lives of others.