Literary Journalism

I have been working with children and teens with autism in many different settings since I was 16 years old. Currently at 22, my knowledge, interest, and experience with autism is continuously growing and expanding. Autism is a relatively new diagnosis and a mysterious disorder; I want to look into the causes or reasons for autism. I am especially interested in hearing from others within the community and learning from their opinions and perspectives. Autism spectrum disorders are a group of neurological developmental disorders that impair a person’s ability to communicate with and relate to other people. Characteristic behaviors include impairment in communication and social relationships, restricted behavior patterns, rigid routines, and repetitive behaviors. Autism is found in all racial and social groups, although it is four times more likely to effect boys than girls.

Personal Interviews

Interview I

My first interview was with one of my closest friends as well as my co-worker, Domenic Longobardi. We have worked as a team at a special needs sleep away camp (Ramapo for Children) for the past three summers. We specifically work with teenage boys, all who are functioning on different levels on the autistic spectrum. Domenic is 21 years old and a special education major at the University of Southern Connecticut. He is currently a member of Best Buddies where he volunteers to spend time with a 51 year old autistic man. We are both actively involved within the autism community throughout the year.

When discussing the possible causes of autism, the common theme that we both agreed on is the theory of genetics. Surprisingly before the summer we both did not have a firm stance on the cause of where the disorder came from. With the completion of the summer we have become firm believers in that the cause of autism can be found in genetics. Having met the parents of every autistic boy we worked with, we felt that many of the family members shared some autistic qualities. None of them were nearly as severe, but being so familiar with the spectrum we were able to recognize the characteristics. Many of the fathers could easily been seen as having Asperger’s Syndrome. Asperger Syndrome is a form of autism where the individual has social and communicative impairments, but has fluent language and good academic ability.

Domenic recalled an example on visiting day involving the father of our camper, Joey. Joey’s father marched into the bunk and shoved a plastic bag of food into Dom’s arms. He made no eye contact and said “This is from Joey,” he then turned around and walked right back out, forgetting to greet his son. To the untrained eye this could have been a strange instance, but to Dom and I it was a classic socially awkward “Asperger like” moment. We are not saying genetics is the definite answer of this mysterious disorder, but from what we have encountered the correlation is high.

Interview II

Bernardo Pace

My second interview was with Bernardo Pace, a self-proclaimed autism enthusiast. Bernardo has a 15 year old non-verbal autistic teenage daughter named Gina, who has been going to Ramapo for many years. Bernardo talked to me about his Gina in detail, starting from when she was a seemingly ‘normal’ baby. Gina developed typically as an infant and for the first two and a half years of her life she was interactive as well as verbal. Bernardo and his family moved around this time and began to see Gina withdraw significantly, less eye contact and speech. Knowing nothing about autism he thought that this was just how Gina was reacting to her new situation and surroundings; a reaction in which language did not work for her anymore, anywhere. That summer they spent a lot of time at the beach, a familiar family vacation spot. During this time Gina seemed to spring back, using some words and interacting with her parents. Bernardo realizes now that in retrospect she was in a situation in which very few social and communicative demands were being asked of her. After that summer Gina withdrew again and has remained more or less this way ever since.

As a concerned parent Bernardo learned everything he could about autism, making it his personal duty to help not only his daughter, but to also help and educate the whole community. Presently, in addition to working with Gina at home doing an ABA (Applied Behavior Analysis) program, he has been a coach to other children with autism for the past 9 years. Bernardo is a great source of information and support to Ramapo for Children. He works with the camp counselors to help them effectively manage and advocate for campers with autism. His work also helps other campers to better understand and support their autistic friends in their bunks. “For me, it’s rewarding to help kids who have a steep climb in life and have such a hard time in so many ways to discover a hidden talent, to find a new activity, a new source of pleasure; to find themselves unexpectedly in a position where praise is being heaped upon them.”

Interview III

Lawrence

My final and most interesting interview was with Lawrence aka ‘LJ’ a 16 year old teen with high functioning autism. LJ has been my camper for the past 3 summers at Ramapo and I have seen him grow and mature immensely. Lawrence lives in Brooklyn, NY and attends a public school, and learns in a self-contained classroom. In the year of 2005, LJ went through a very rough period of time where he seemingly could not control his impulsive, dangerous, and often violent outbursts. His parents decided to take him off all medication and focus on other behavior therapies. This past summer of 2007 LJ has almost shed all of his inappropriate outbursts and in his words has “become a calm man.”

LJ is a very interesting individual to me, his verbal expressive language is phenomenal, although he frequently pretends that he cannot speak. It took a lot of prompting and pushing for me to get him to talk to me honestly. As with many individuals with autism they often pretend that they do not understand and limit their abilities, much like most typical teenage boys do. I asked Lawrence directly what autism meant to him. He said “Ramapo is for the autistic kids, Ramapo is autistic.” In asking him to explain further he began talking about high functioning and low functioning. He did not tell me directly what those terms meant, but he did even better by giving me examples. LJ has an excellent memory, he told me of a time where he himself was being very ‘low functioning.’ One year LJ’s father took a different route than normal to get to camp by taking the NY State Throughway. Lawrence, accustomed to routine was very upset about the different highway and had a tantrum in the car. “I was being low functioning with all that crying and hitting Daddy and that damn NY Throughway, I needed the Taconic State Parkway.” He said that when they take the Taconic he is high functioning, happy, and calm.

I have taken a lot of one on one time with LJ to practice appropriate behaviors through modeling, in a way that he can relate. Loud noises tend to aggravate and distract him, although the whole world is one big loud noise to Lawrence, he seems to hear things I can’t as hard as I try. Often Lawrence will tell me that he needs space when he talks to me, he says that my eyelashes are loud. “Jessie your eyelashes are loud and they hurt my ears.” At first I thought these sayings were nonsense, through exploration of autism I realized that in fact blinking my eyes could be distracting to him; due to his extreme heightened senses.

When involved with activities that are ‘too loud’ LJ will ask if he can take some personal space. This was a big issue that we worked on together. Previously LJ would have aggressive outbursts when he was overloaded and over-stimulated. He learned how easy it is so be open and clearly say “Jessie I need personal space, can I sit outside?” Or if he is really on edge he will hold his ears, make a painful expression with his face and look to me, without saying a word I will nod my head and he can leave. LJ loves to write, draw, and make lists with markers and paper so I gave him his own notebook to carry around. This is another outlet he can ask for if he is not feeling comfortable. The notebook has been such a success that he relates it to being a mature and grown up man. “Writing in my notebook and being a flexible man is high functioning.”