Autism: The gift with no return

Benjamin Alexander

“What would you like for your Bar Mitzvah, Ben?”

What kind of dumbass question was this? So, what do you give a child for his Bar Mitzvah? ITunes, clothes, money. Fountain pens used to be a popular choice, but that wouldn’t do me any good. You see, I have autism, so a pen would provide me no benefit. My thoughts escape only through a keyboard.

Gifts come in all shapes and sizes. Some are big and some are small. They often are wrapped in cute boxes with ribbons and bows, along with a card from the giver. “Congrats on your Bar Mitzvah. We are so proud of you!”

My gift of autism did not come in a cute box, though I do feel like I’m trapped inside one. No wrapping paper or ribbons. Not even a card to identify its source.

So who gave me this gift? God? I don’t know. There was no note attached. No return address. Anyway, why would God leave a note? God could talk to me directly. Maybe whisper in my ear to congratulate me.

Giver or not, I was pissed at God. I still am. I let everybody at my Bar Mitzvah know about those feelings, as the fire and brimstone emanated from my computer. The Rabbi had told me to tone it down beforehand; I could not use that type of language in the synagogue. I didn’t care. I was just thrilled that I had a pulpit to express my views. I had been screaming for years, with nobody to listen.

My D’vor Torah was my method of delivering my thoughts. I had everyone’s undivided attention as the words came out of my computer, delivering the message of a very angry 13-year-old young man. My Torah portion for my Bar Mitzvah dealt with animal sacrifice, something that we in modern times cannot relate to, but I was able to tie it all together.

I began with, “I have been at war with God over my autism.”

“Oh my god! I can’t believe he said that,” was probably on the minds of many of the attendees. I continued, “I could very well be the animal that was sacrificed to the autism God.

“How could God allow autism to attack me? God is supposed to be a loving and caring being, according to the Torah. What kind of God takes away a child’s voice and his ability to interact with others? Did God make me this way? What kind of cruel sick joke is this?”

People were breaking out the handkerchiefs. Both sets of grandparents were bawling their eyes out. Congregation members who knew me as the autistic kid who ran around the sanctuary had their jaws practically drop to the floor. I had their full and undivided attention.

“I have a hard time dealing with my anger towards God,” I wrote for all. “I can’t change autism and I wish that I could. Autism never gives me a break.”

I continued on with this theme, though I did pause long enough to thank everybody who helped me to become the first person with autism to make a Bar Mitzvah at my synagogue. Ironically, I gave a large portion of my monetary gifts to Autism Speaks, so that they can fund research to cure the gift of autism that I received so long ago.

Back to that gift. I wish that I could return it. It just has not lived up to all of the hype, instead causing me much agony and pain. Unfortunately, I can’t just go back to Best Buy and get in the customer service line. I can’t return this gift because it is too small or too big. Autism is a one-size-fits-all, even though we are considered to be on a spectrum. One in 88 children are like me. Boys receive the gift four times more often than girls. This really isn’t fair; I am all for equal opportunity for women.

Recent studies have demonstrated that people with autism have too many synapses in their brains. Perhaps this is the reason why the gift of autism has left me with persistent insomnia, given the overactive firing of neurons in my brain from the time when I was little till present day.

My parents did everything they could to get me to sleep. Dad would lie in bed with me as we watched videos of the Masterpiece series on the Six Wives of Henry VIII and Elizabeth, thinking this would bore a little autistic boy into deep slumber. It did the opposite; I became enthralled with the Tudors. So obsessive with that I sought out books on them.

Nobody knew I could read, since I couldn’t speak. I taught myself from the schoolbooks my sister Hillary left in my room. I searched for more books by climbing a built-in bookcase in our den. My parents thought my climbing was just another component of the gift. They had no knowledge of my thirst for literature until they discovered that I could communicate by typing. “Why is he constantly pulling down Benjamin Netanyahu’s book?” they had wondered, thinking that I was just recognizing my name on the book. Needless to say, everyone was blown away — and to think that it was all related to the gift.

Anyway, when the videos failed to put me to sleep, Dad would strap me into my car seat and off we would go in the car. Oh how beautiful were the lights on the Crescent City Connection! I can only imagine how many miles we drove just trying to put me asleep. This attempted therapy only increased my knowledge of the geography of my hometown, even though the gift would prevent me from exploring these areas myself.

Unfortunately, the gift of autism keeps on giving. Sometimes, one can get a two-for-one special. Buy one gift and get the second one free. For me, as with 50 percent of all of those with autism, it is epilepsy. The week after my Bar Mitzvah, this gift was delivered with a full-blown grand mal seizure with the aura, the shaking, and the ictal stages! Was this a punishment from God? Had I pissed Him off with my D’vor Torah, or was this just an extension of the gift?

Temporal lobe epilepsy was my diagnosis, which caused all kind of new behavior issues at school. I felt the need to grab people. Sometimes, it was their hands — and not a simple handshake, but a twisting of fingers. I accidentally broke a finger of a teacher who had been a backer. The teacher’s union filed a complaint against me. Ensuing incidents led to me being banished to a homebound semester in ninth grade. I learned who were my real friends, as many of my classmates set up a Facebook page and a petition to “Free Ben Alexander.” I still had to sit out of school for a semester, as I needed to get my epilepsy under control.

Confidence is a hard thing to display when one is autistic. For other people, actions and mannerisms openly display their confidence. But the gift of autism prevents me from controlling my actions and outward mannerisms. I can’t speak. I have to use a computer to transmit my thoughts and feelings. Other people express confidence by the tone of their voice. I have no voice. I have only the monotonous voice of my laptop computer. I have no idea if my laptop displays confidence, but it sure has helped me to combat the ravages brought to me by this insidious gift.

Children receive gifts throughout their lives. Christmas, Hanukkah, birthdays, graduations, sometimes even for no reason at all. They come in all shapes and sizes, making it difficult to picture what is inside. For me, the autism gift box contained a ghastly demon who arose and robbed me of a normal childhood. This demon unleashed its terror by depriving me of spoken language and the ability to socialize like anybody else. The secondary gift known as epilepsy makes a haywire of the electrical circuits of my brain, which requires me to swallow 12 capsules of an anti-convulsant daily. This does not include the pills for anxiety, all packaged in this gift called autism.

So, who in the hell gave me this gift? Please, take it back …

Benjamin Alexander, a native New Orleanian, is a sophomore at Tulane University. He is an English major with a focus on creative writing. His published articles include My Adventure in Life, a 2004 essay describing his struggle with autism that received a statewide first place award in the Young Authors Contest sponsored by the Louisiana Reading Association, and a poem, Autism Sucks Part II, that appeared in the anthology A Celebration of Poets: Heartland Grades. Benjamin Alexander can be reached by email at balexan6@tulane.edu.