Words. What are words? They are units of language that consist of one or more spoken sounds or written representations that function as the principal carrier of meanings. In my case, words are my written expression of emotions that are not heard but delivered through units that the reader visualizes. Like most children, I too was exposed to words; however, I could not verbalize them like my peers, which was confirmed through my autism diagnosis.

I received a computer at an early age with the expectation that my interactions with it might bring me out of my autism funk. Maybe a cure would miraculously come to me by surfing the web, but I suppose my parents thought that the numerous educational software programs could make me speak. I had an account with Dictionary.com that exposed me to a new word every day. However, it was my experience learning grammar in middle school and high school that enabled me to combine these words into meaningful passages that would take away the silence and frustration of my autistic self.

From the time I enrolled in regular schools and not the Chartwell School—my previous autistic school—I was assigned a journal-writing exercise every day that was designed to stimulate my brain and to express my innermost thoughts. Journal entries opened an outlet for me to be creative and provided an escape from my silent world of autism.

The journals also informed my readers of what it was like to be me, the inquisitive kid who could neither speak out loud nor interact with others.

Typically, I would write the passages at school with my assigned aid during the first period of the day. Sometimes, I would receive a prompt for a subject to write about, or I would be allowed to freelance on the subject of my choice. One of my first journals was a piece that I wrote when I was 9 years old. I was placed in the third grade at Metairie Grammar School after spending four years in the school for autistic children. It was a new experience for me, as I had never been in a school where I could receive a formal education with a standardized curriculum.

The principal assigned me to the third grade based on age appropriateness, even though I had never been instructed with the tools that a kindergartener through second grader would receive. With one of my first assignments, my teacher asked me to write about my past experience at Chartwell School, the school for autistic children in New Orleans, and to let everyone know a little bit about me.  

My Adventure In Life

October 2, 2003

My name is Benjamin Alexander and I am autistic. I am nine years old and in the third grade. My life began when I began to type to communicate. I can now tell you my story.

When I was two years old I realized I was autistic. Sometimes I would like to be alone and spin around in circles. I liked to be alone because I could think. I could not think when other people were around. I could not look in your eyes because it was painful. When Mom tried to interact with me it was complicated and hard.

When Mom would try to do pretend play, I did not want to play because I needed to think. I thought about many things such as complicated math problems and life in general. My parents tried to help me learn to talk and interact but I really did not need it because I am smart, even though I cannot talk.

I was in a special school for autistic kids. It was awful. I felt trapped in my mind. It was like torture because I could not tell anyone how I felt. I was sad and frustrated.

The day my parents figured out that I could communicate by typing was the happiest day of my life. I taught myself to read at 2 years old by looking at books. I taught myself to do math at age 5 by reading Hillary’s math books. I have read her math books every year.

Now my life is completely different since I started third grade at Metairie Grammar. I now have friends and playdates. It was lonely to never have a friend before this year. My best friend is Chazz Wilson. We had a great time together at the aquarium last week.  

My life is just beginning and I cannot wait to start living. I am so grateful to my parents for finally finding a way for me to communicate.

THE END

The above journal was somewhat crude as I look back at that piece, but after all, I was only 9 years old. Just before writing the piece, I read Tito Mukhopadhyay’s book titled The Mind Tree. Tito was an Indian autistic boy who was very much like me in that he communicated in the same way I did. Tito was nonverbal and communicated by typing on a keyboard in a similar fashion as me. He stated in his book that he felt trapped in his mind, and that same feeling was also mutual.

My teacher was fascinated at what I wrote, so she entered the piece in the Louisiana Writers Association contest. I actually won first place among special education students for nonfiction writing with my interpretation of my life as someone with autism. Shortly after my first place victory, a newspaper story in the Times-Picayune had my picture with the title “Autistic Boy Wins State Writing Prize.” The article stated that I was a “voracious reader, a sports fan, and a follower of current events.” My teacher said, “I have never seen a situation or a writing entry quite like Ben’s. It was very moving to read. When I read that, I thought, ‘There’s so much more than what you physically see when you see Ben.’”

So, I continued to write about books, sports, current events, and, of course, autism. The newspaper story about me made me feel vindicated because the Chartwell School thought I was unintelligent and incapable of producing such work.

My Adventure In Life also introduced me to my first real friend, Chazz Wilson. That said, I don’t want to give the impression that my Chartwell School schoolmates were not my friends, but we didn’t interact in the typical manner that most people who call themselves friends do; we just could not do it because autism does not allow social interactions. On my first day at Metairie Grammar School, however, a figure larger than life presented himself to my mother, who was in attendance with me. In a soft, deep twang, I heard a phrase of words that I had never heard before: “Can I be Ben’s friend?” with the emphasis on the “end.”

My mother just lost it because she was overwhelmed with emotion due to the fact that her autistic son, who was not wanted at the previous school, had now found someone who accepted him with no pretenses. Chazz literally took me under his wing and carried me around the school. He assisted me with assignments, which proved that I could work with others and that I was not a hoax as the Chartwell School implied.

As I entered middle school, I continued to write daily journals, and I attacked autism with every opportunity that I had. Often, I was given a prompt to write about, and I would usually mix autism into the conversation. It felt good to bash autism, and I hit it as often as I could because it seemed to continually jab me in the face, just to let me know that it was still there. I turned one of Robert Frost’s most famous quotes into a soliloquy that attacked the villain known as autism.

Ben Alexander

October 8, 2007

“Two roads diverged in a wood, and I—I took the road less traveled by, and that has made all of the difference” – Robert Frost

What if you stood at a fork in the road? Someone comes up to you and pulls out a gun. The person tells you that you must take the dangerous and bumpy road or he will kill you. This bumpy and dangerous road is the travels of autism that I take every day. Nobody takes this road unless it is forced upon them.

Autism roads are really dangerous and scary. The people who travel this highway have no control of their destination. There is no GPS to guide your way. Villains hide out to confuse the traveler. The forest road is thick with thorns and debris that makes it even more dangerous.  

The road that I was forced to travel is not a scenic route. It is not well marked. The route doesn’t traverse a beautiful place. Only with a godlike source can I make it to a nice road.  

My emotional journals about my autism affliction had the attention of teachers and students alike, as my words opened their minds to my world. My words showed them that there was a creative being held captive in this little boy.

I wanted to scream at the world and say, “I am here. Listen to me!”

Therefore, I typed my words through my journals so that everyone could hear Benjamin Alexander. “Get out of my body! Listen to me, autism; enough is enough. Go terrorize someone else.” Once again, I was given another famous prompt to tie to my autism, but also to explain that I was very much like my peers.

Ben Alexander

December 9, 2007

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away.” – Henry David Thoreau

Henry David Thoreau’s quote describes what it’s like to be me. Autism prevents me from moving along the social path as my colleagues. I have been able to travel this path by going a different route. I have been circling the path over the past years. They all have had a head start. We will arrive at the same place, but just at different times.

Thoreau’s quote also promotes individuality as opposed to conformant. Not everybody likes Led Zeppelin. Some people like Barry Manilow. I prefer Genesis and Springsteen. However, we can all like a variety of music.

Thoreau’s quote applies to what is great about our school. We have a diverse student body with a wide variety of ethnic backgrounds. We have Jews and Muslims studying side by side. Jocks and geeks get along well together. Thoreau would love to come to Haynes.

Haynes Academy For Advanced Studies, my middle and high school, provided me an opportunity to be like its neurotypical students. However, I remained in the periphery because autism prohibited me from fully participating socially. I wanted to socialize like my schoolmates, but my brain would not let me, so I continued to speak out against autism through my words, not to make people feel sorry for me, but to let them know that deep down inside, I wanted to be included.

The extent of my inclusion was taking classes with the so-called normal kids. My exclusion consisted of not being in the “in-crowd.” You see, autism had me all to itself, and we were exclusive. My journal passages reflected what my world of autism was like and also displayed how I could laugh at myself, especially as I described my obsession with the seven dwarfs in the following entry.  

Ben Alexander

December 9, 2007

When I was a child, my favorite toys were the seven dwarfs.

I didn’t play with toys as a child. Autism wouldn’t let me. I didn’t know how to play with toys. I did, however, have a collection of stuffed dolls that I was fascinated with. The seven dwarfs were my best friends. Doc, Sleepy, Grumpy, Sneezy, Dopey, Bashful, and Happy had free reins of my room. I would line them up as any good autistic boy would do. This would frustrate my parents considerably. They would find them lined up in the hall.  I would line them up on the stairs. They might even make it downstairs.

Grumpy was my favorite. I would probably hold him more than the other six dwarfs. He was always first in line. Nobody could take that away from him. Dopey was always last because he was the youngest.

I never played balls or games with a toy. I just couldn’t do it. However, I loved my dwarfs. Just don’t sing hi-ho. It drives me crazy.

Autism had a way of restricting my ability to interact socially with others in games. One thing that really frustrated me as a kid—and still does to this day—was that I realized I was not that different from my peers. Everyone who attended Haynes was smart, as it was a magnet school that required high academic performances. My peers knew me well and just thought of me as Ben. I would cut up in class and would often have to be taken out to regroup and compose myself, which I sometimes do to this day.

Sometimes, I would run away and head out of the school gates. Very often, the principal would call my father and say, “Doctor Alexander, Ben ran away again, but he is ok.”

I would run away a lot, thinking that autism couldn’t keep up with me, but I found out that I couldn’t shake the bastard.

To my schoolmates, my autism did not matter, but to me, it kept me from being fully incorporated into student life. I wanted to emphasize that despite my goofy or quirky outward autistic appearance, my innermost likes and desires were compatible with the rest of my schoolmates. I expressed these thoughts in the following journal.

Ben Alexander

February 17, 2008

What makes me unique?

You may not have noticed something. I am autistic. I am the only autistic kid in my class. Everybody else, in fact, can speak. Not me. I have to use a computer to speak for me.

The autistic characteristics that I have are also unique. I am really bright. The most common autistic characteristic is a sensitivity to sounds. I am not like that. I enjoy sounds. I particularly enjoy the sounds of large stadiums.

I am also unique that I am a lover of music. I listen to all kind of music. Rock music is my favorite. I am just like any other kid. Am I really so unique?  

It was autism that made me stand out in this school of very bright children. I too was very bright, yet I was the only autistic kid in this advanced magnet school—and I was nonverbal at that. I know that I may be repeating myself, but I really wanted to blend in with my schoolmates as much as I could. I cannot emphasize this enough. Every prompt that I received, I figured out a way to speak out about autism because I felt smothered by autism’s clenching fists around my throat that continued to isolate me from my peers.  

One specific writing prompt asked me to discuss my favorite place. This was easy to write about because on August 29, 2005, my world and my family’s lives changed forever. Hurricane Katrina whipped my hometown of New Orleans as the levees failed and the city filled to the brim with water. My maternal and paternal grandparents lost their homes with all of their precious possessions. A portion of my home flooded with minimal damage, except for the emotional toil on my parents, sisters, and me.

We evacuated to the beaches of Sandestin, Florida, traveling a normally five-hour drive in fourteen miserable hours of tropical force winds. My mother did not want to evacuate to Baton Rouge, but she thought we should go somewhere where we could have fun since she figured we would be gone for a long time. They took two cars to Florida, and it seemed like we crawled the whole way. I can remember that as we drove to the Sandestin Hilton, my father sarcastically said, “I must be out of my fucking mind, driving to the beach for a hurricane.” The county where our hotel was chose not to evacuate, so we felt safe, even though we could feel the force of the wind hitting the high-rise building and see the angry waters of the Gulf of Mexico crash upon the beach and its dunes.  

The very next day, we heard about the levee failures, and my parents were able to secure a rental home in the Sandestin resort community. Then, our “hurrication” began. My sisters were enrolled in public schools, Hillary in high school and Lexi in kindergarten. The Walton County public schools were overrun with Hurricane Katrina refugees and could not accept me because they could not provide an aid for me in school. Thus, I hung out at our home in exile. My everyday routine was disrupted by Hurricane Katrina, as I was displaced from the security blanket of Metairie Grammar School and the new normal friends that I now had.

Although I felt left out and missed my schoolmates, the good thing was that I was on the sandy beaches of Florida and could swim in the Gulf of Mexico and play golf every day with my father at the Burnt Pine resort course. Two months later, we returned to our home in Metairie, and I was able to begin my daily education back at my old school. So, when I was later asked to write about my favorite place, New Orleans came right to mind.

Ben Alexander

August 20, 2008

New Orleans is by far my most favorite place. New Orleans is the most unique city in the world. We are shaped like a bowl that can fill up with water. Oh, by the way, did I mention that has happened already?  

New Orleans is built in a crescent, which is why it is called the Crescent City. We are a sandwich.  We are squeezed between Lake Ponchartrain and the Mississippi River.

We are the soggy mid-section of a hamburger.  

New Orleans has a unique population of people. According to its mayor, New Orleans is a chocolate city. We, of course, have all flavors of chocolate. Dark, white, milky, crunchy, mint, and Swiss chocolate are all part of our melting pot.  

My most favorite part of New Orleans is the Superdome. It stands out like a huge mushroom in the skyline of the city. On Sundays, the loud noises could blow the roof off.  Oh, by the way, that too has already happened!

For my entire life, I have questioned why I am the way I am? “What is the matter with him? Is he retarded or something?” remarked a classmate from my pre-school class. Another said I was “mean” because I didn’t want to play with her.

It is quite obvious now that I am not retarded nor am I mean. I am autistic! I was not born autistic, though, as told to me by my parents. I cannot recollect this time nor should I. I have watched videos of myself reaching for a telephone and saying “hello.”

If I were to continue with the exhaustive expectations of becoming normal, then it would probably drive me insane.

No one knows why people like me have autism and, because of that, there is no cure. Thus, I should basically follow a philosophy of carpe diem, seize the day, and not worry about a future that I can’t control. The following journal piece says it all.  

Ben Alexander

January 13, 2008

“Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That‘s why we call it the present.” Babatunde Olatunji

The above quote describes living for the day. You can’t worry about the past. The future is what happens when it happens. We should not think about the future because now is what is important.

We are lucky that we have the ability to affect the present. This is the gift of life. Why should I think about the future when I need to take care of today?

I consider myself very fortunate that I have been able to communicate through writing, as I have come in contact with many on the autism spectrum who are locked inside of their minds and who have no way to express themselves except through frustrated screams and bad behavior. 

What more can I say? Just words. Not just haphazard words but those connected to one another to convey my innermost thoughts—the expressions and ideas of a young man whose audible words are silent. These words that are formed through linguistic symbols represent the language that is trapped inside of my brain and cannot make its way to the tip of my tongue. These words are my connection to society, so as not to quarantine me from the rest of the so-called normal world. Just words?