“Why does this need to be so difficult? Nothing about spelling makes sense,” I cried, frustrated yet again.
“Why can’t a word be spelled out the same way it sounds? Why do these words have to have a silent vowel? Why do we have three ways to spell ‘there’? Why do I need to change Y to IES? Why doesn’t Spelling make sense?”
Another meltdown at my house.
There’s no better metaphor for my life than that episode during the 3rd grade– and the sense that everybody, just everybody, got it except for me. My sisters got it. My parents got it. My teachers got it. The other students got it. And then there was me. It was as if I were a traveler in a strange, inscrutable land.
When my parents learned that was something different about me. My parents tried their best to teach me what manners I lack, but something was missing. My parents sat down with me, they tutored me, and I tried to retain what was supposedly important. The overall experience was not unlike bashing my head against a brick wall. It wasn’t until the 3rd grade I had enough of trying to learn something that wasn’t fun or valued. At last during a regular spelling test review, I snapped. My mom asked why spelling was so hard for me and I answered. It was hard because it made no sense. There was no use for silent vowels. Words weren’t spelled out the way they sounded. It was then my parents learned that I was a unique individual and the conventional mainstream could no longer support me.
Were my mom and dad scared of this development? Yes, of course they were. Their child was going through a phase they never heard of before and I was traveling down a road that they cannot walk. And what could be worse? Nobody knew what was what was ailing me, let alone help me. We needed answers.
Keep in mind; this all took place in 1996, before the Internet was available. My parents couldn’t just GOOGLE my symptoms and make diagnosis. They go about this the old-fashioned way, by consulting expensive doctors. After some extensive research and testing it was determined that I have High-Functioning Autism.
Some parents may shudder in fear of such a diagnosis, because it means that people like me won’t have a normal conventional life. Not my parents, in fact they were relieved to hear that I have autism. They were relived because they now had a name to my ailment and know what kind of challenges my lay in wait upon my path.
Autism, taken from the Greek word meaning “self”, has been described as many things over the years since its discovery in the 1900’s. I want to start off by saying that autism itself is not a disease or disease-like in any aspect. “Where does autism come from?” is a question that still has no definite answer. But rest assured; it is not a contagious phenomenon and it is not something that can be passed off to your next of kin. In the beginning, most people blamed mercury poisoning as most people did in the days of Lewis Carroll when insane asylums were still popular. More modern theories suggest maybe certain chemicals are responsible for changing one’s brain structure and triggering autism. Others say that autism is the aftermath of when a child has problems being born. As realistic as these ideas are, as of now there are still no definite reasons as to why or how autism appears.
If you want a clean and cut definition of what autism actually is and what it looks like, you may as well ask a mathematician to square the circle or take up a hobby in cat herding. Because, truth be told, autism comes in many forms just as there are numerous print patterns on one’s hands. If you Google the term now, you may get a definition like, “Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain’s normal development of social and communication skills.”
Unfortunately, like all misunderstood concepts in the world, most people will trust convenient rumors and not bother to do actual research and find the truth. Autism is not immune to this trend. Some rumors on autism include:
-Autistic people are specialized geniuses
-Autistic people are mentally disabled
-People with autism are incapable of empathy
-Autism is the result of child abuse
-Scientists have found ways to cure autism
In a nutshell, Autism is a social disability. People with autism, in all of its forms, are still just as intelligent as the next “normal” person. However, they just do not know what to do in very specific social situations, because they have not been told what is polite or not and what are the unwritten rules of society.
Whether we notice it or not, when we humans interact with each other, we dive into a subconscious social bank that is known as a social repertoire. The social repertoire is a reservoir of preconceived notions, insights, manners, and experiences of what to do and say in very specific social situations. Those without any social deficiencies normally have a readily available arsenal of proper social behaviors and a broad range of sociable topics. Those with autism, however, require help to build this reservoir and guidance on how to interact with others both professionally and socially.
One defect that I have in my communication skills is my ability to express myself. I do have a sizeable vocabulary and I have thoughts and opinions like everyone else. The problem is translating my thoughts and feelings into words and then sorting those words in the right order and the right tact. When I am in a conversation and I want express my opinion on the topic at hand — even when I have a message to express — I had a hard time finding the appropriate words to fit the message at hand. Recent research has shown that the average human brain works faster than the mouth can operate and sometimes the message in our heads loses clarity when our mouth tries to translate them. People with autism have especially hard time with this verbal cluttering.
Similarly, expressing feeling was also a challenge for me. Growing up there was a lot I didn’t understand, including how to be polite. As a child and as an adult, I was an honest person. If you ask a question, I gave you an honest answer. If you didn’t like my answer, then you should not have asked me the question. That was the way I was. It wouldn’t be until years later that I would learn how to curb my honesty and be more tactful towards others. Ignorance does not equal unfeeling. When I failed to provide the right emotion at the right time, it was not because I didn’t care. It was because I didn’t know how to read the atmosphere and I didn’t know the next step in the conversation.
“Am I to assume that the author of this blog is prime example of an autistic individual and should follow his example to the letter?” you may ask yourself. “Does this self-memoir depict the bare bones of every autistic person in the world?” The answer is no. Every person is an individual and that goes for autistic individuals as well.
Life with autism will never be easy, but nothing worth doing ever is. Thankfully I have my own sanctuary to help me organize my thoughts through turbulent times. This place is called Autism Island, my safe place and home.
Pacing, Happy Place, Daydreaming, Autistic Fantasy, it all means the same thing. When an autistic person feels stressed, we dive into a fabricated dream world of our creation. Every Autistic individual has his or her own island where feel safe, secure, and the world makes sense to him or her.
When I was a child and had yet to learn the ways of the adulthood, I would have to leave my island and venture on the uncharted continent of Real World. In this continent, there were many cities. Each with its own set of rules of society. One city was called Elementary School; another was called the Boy Scouts; another was called Church. Some of these cities were simple in structure and intent, while others were weirder than Wonderland.
Whether we like it not, everyone, autistic or not, has to come out of their happy place and face the Real World and it harsh demands. These day-to-day quests were like daily adventures to me. Each day, a new challenge, a new possibility, a chance to gain or lose. Each day was my Journey with Autism.
My journey began in the quaint town of Elementary School.
While in Elementary School, I had a lot of the same interests as my peers: Pokémon, Legos, and the like. But, there was still plenty that I didn’t understand. Like the reason behind some of the actions of my peers and what was taught at Elementary School.
As a child I was curious and had many questions. Because of my autism, I couldn’t always materialize them, but in my head I was constantly asking questions. Not questions like: Where do babies come from? Or, What does this big red button do? I asked questions that involve WHY. Why do I need to eat with my mouth shut? Why do I need to look at the person talking to me when I listen with my ears? Why do I need to get up and go to school when it is still dark outside? Why can’t I solve my problems with slapstick humor like they do on TV?
Every day I felt like I was participating in a game called Society and everyone but me knew the rules of this game. Every day I was constantly asking myself, “Am I playing this game the right way?” Because no one had bothered to explain the rules to me all at once, I often made mistakes of what to do in certain situations. Such as the time I was trying to practice sharing in my churches’ cry room.
At the time I thought that the term ‘sharing’ meant distributing and assigning toys to the other children and then reassigning the toys after a time. That way everyone in the cry room got a turn with the toys. Eventually, my misunderstanding got me kicked out of the cry room.
I do make mistakes. I admit it! Some of my mistakes are more forgivable than others. Some mistakes could have been prevented if I commutated towards others more often. Others were committed out of ignorance. Regardless of circumstances or excuses, I’m not perfect and I don’t try to be. But my autism is not solely to blame for every little misstep that I make. I know plenty of people who are not autistic, but they make mistakes that are as lousy as mine. I learn better from firsthand experience and I make mistakes like a human so I can learn how to be a person.
I needed a role model, a template, a guideline, anything to help me get a bead on what is the proper reaction in a peaceful situation. So where does an 8-year old turn to for inspiration? Television, of course. Even as an 8-year old I wasn’t completely gullible. I knew just by walking outside my house that monster attacks, talking trains, and intelligent animals weren’t part of everyday life.
However, there was this one show that seemed remotely plausible. It was animated sitcom-like show about an ordinary high school student in an ordinary world called Doug. True, the charters were colored a bit differently than in our world (blue, pink, green…), but it was about a regular kid having regular problems, kind of like mine. In the first few days of realizing this, I tried comparing my life to the main character’s step-by-step. I soon saw that my life was not nearly so…dramatic compared to the show and that there was a fine line between picking up on Meta-messages vs mimicking step-for-step, that there was a big difference between reality and fantasy, and that I needed the wisdom from more than one role model.
Finding out the why behind socializing as a person was only half of my problems at Elementary School. I also had trouble understanding the why behind my academic studies.
Math and science I could comprehend without fail, because it was sensible and had a recurring pattern. It was the other courses that confound and confused me. Social studies, language arts, history, and the most loathsome of all: spelling. None of these followed any logic that I liked. That is to say: there was no logic at all.
-English: was filled to the brim with exceptions and counter rules.
-History: was riddled with chaos and illogical dead guys.
-Social Studies: there was no pattern to human behavior.
My parents tried desperately to squeeze any academic accommodations or educational helpers from the managers of my current school. However, the sad fact of the matter was that the school didn’t have the resources I needed to carry me to the next level. As such, we began looking for a new school city to help me with my unique needs.
“Seek and ye shall find”, they say. I didn’t know what I was looking for when searching for a new school. I had assumed that all schools were built the same and the only differences between any of them were the team mascots. If there were any special schools, surely they couldn’t exist near me. Thankfully, I was proven wrong.
After much persistence on my parent’s part, a solution was found. A special needs school. The school was specifically designed to help non-copy-and-paste students, which is exactly what I was now.
This school’s method of organizing classes was greatly different than that of my previous school. Unlike regular schools whose practice is the equivalent of one-method-fits-all, this facility functioned on a personal spectrum. The classes were structured into grade levels in accordance with an individual’s academic proficiency, instructional level, and social maturity. While in these specialized classes, the teachers were trained to hone in on the student’s individual strengths and weaknesses and break down the content of the classes into more manageable portions at the individual’s own speed.
After taking the tour of this school, my parents and I were sold and agreed that this school would benefit me greatly. We made immediate arrangements for my transfer to this new school.
After the first day of class, I felt more at ease than I ever had in a long time in any school. Life at this academy was much less anxiety provoking than it was at the previous school and for the first time, I was at peace with my schoolwork and I was eager to get to class. The class work was easier to understand, the homework loads were more manageable, and I was able to forge a stable social relationship with my peers. The school was very expensive; however, according to my parents, it was the best investment they have ever made.
This was also a time where I was given a new device to help me with my studies. During my elementary school period, it was discovered that I had trouble remaining on task when it came to reading anything for an extended period of time. The problem wasn’t that I didn’t like to read; it was that I had trouble concentrating. The symptoms at the time were that my eyes would grow strained and tired much too quickly and I could no longer look at the pages without feeling discomfort to my eyes. Along with a unique learning approach, Autism can also bring heightened sensory temperaments (smell, touch, sight, etc.). In my case, the light from the reflective white pages of my text was causing strain on my sensitive eyes. To this day I wear darkened lens. At first my parents tried medication to improve my concentration, but only to find it only partially effective.
After some research about concentration techniques, we ran across an article about Irlen Lens. We decided to take a chance with a special eye doctor that crafts these unique lens glasses to filter certain light spectrums that would cause discomfort to sensitive eyes. These glasses ended up being the solution to my attention problem.