Mariano Bula, video game design sophomore, sits in his kitchen Wednesday. Bula attends Northwest Vista College, but participates in this college’s autism club, AMAR, which uses an initial from members Ann Marie Hessbrook and Mariano Bula; Avonte Oquendo, an autistic teenager who died in New York; and Michelle R. Garza, the club’s original adviser. Photo by Aly Miranda
Illustration by Juan Carlos Campos
Alamo Colleges student with autism helps club explain differences.
By R. Eguia
sac-ranger@alamo.edu
Mariano Bula, a video game design sophomore at Northwest Vista College, struggled with his autism in grade school.
“As a child, all you want is to be happy and full of life, but it was challenging because I was always placed in special education classes and I just wanted to be with the regular kids. It was not easy for me to accept my autism as a child,” Bula said.
When he began elementary school in Panama, he was considered on the lower-functioning end of the autism spectrum until he received training and assistance that helped him take control.
He has since grown to embrace his condition.
“It is interesting because we are humans, just a different type of human,” he said. “We have the ability to think differently than normal people.”
Bula, 27, is one of 3 million people in the U.S. and tens of millions worldwide affected by autism.
Autism Awareness Month is celebrated throughout April, including World Autism Awareness Day April 2. The day was adopted by the United Nations in 2007 to illuminate autism as a growing global health priority.
Autism Spectrum Disorder and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
People with autism are often referred to as “on the spectrum” because they can range from highly functioning to low functioning.
Bula, who today is considered high functioning, explained the root of the word autism is from the Greek “autos,” which means “self.” Combined with the Greek suffix “ismos,” which means action or state of being, it roughly translates to a state of being absorbed by one’s self.
Bula identifies with this definition because he likes to immerse himself in other worlds when he plays video games. He compares people with autism to video game characters because they are not afraid to be who they are.
Autism statistics from the U.S. Centers for Disease Control and Prevention identify about one in 68 American children as on the autism spectrum — a tenfold increase in prevalence in 40 years. Research shows this increase is only partly explained by improved diagnosis and awareness.
Bula said inspiration for video game concepts comes from everything, and he enjoys taking classes outside of his major to keep him interested.
He is enrolled in four courses this semester and said being in college is a blessing because there are so many experiences that were inaccessible to him in high school, mainly being able to share a classroom with regular students.
He has attended the Alamo Colleges since he graduated from Marshall High School in 2011. His main focus is making sure his grades are up, and he emphasized the importance of taking school seriously.
He said he does not have a hard time speaking to classmates, especially those who harmonize with his own colorful personality.
Some students are immediately aware Bula is on the spectrum, while others are completely ignorant about autism, he said.
One of his classmates became interested in learning about autism after Bula explained his condition to her after a speech class they had together.
Business administration sophomore Ann Marie Hessbrook partnered with Bula in a public speaking class at this college. He inspired her to found Club AMAR.
AMAR is an acronym for the names of Hessbrook, president and founder of the club; Bula; Avonte Oquendo; and Michelle R. Garza, the original club adviser.
The club was established in spring 2014 after Hessbrook and Bula completed a speech presentation about Oquendo, a 14-year-old autistic boy who died after running away from his school, where he was not properly being watched. Oquendo’s story, which can be read in the March 30, 2014, issue of New York Magazine at nymag.com, provided insight on the dangers of wandering, a common problem among children with autism.
Hessbrook said the club is making an impact by spreading awareness across campus and focusing on educating professors to create a non-discriminating environment for students with autism.
Bula said professors understand what autism is and, in his experience, they have tried to treat him just as they would any other student, with respect.
“I know I am not like other students and if I am having a hard time, I just ask questions. I know my professors will tell me how to do better,” Bula said.
Honesty is the key to everything for Bula. He said it is very important people know he is on the spectrum, especially professors and classmates.
“I am here to be a college student, and I am going to stay focused and serious.”
Many of the friends Bula has made during his college experience are also on the spectrum and have linked him to outreach groups like the 500 Olmos Club, a local parent-led group that caters to families who have children with autism.
Bula said this group is a second family to him because he is surrounded by people who have similar circumstances and understand his struggles.
“People have to learn to love themselves, to be proud of themselves,” he said. “It used to make me upset until I realized I could use it to do something great. People should embrace it and be happy with who they are no matter what.”
In the 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged under one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.
Bula said it is sad to see a person with autism who is lower functioning because they don’t have as many opportunities as someone who is higher functioning, but he does not like it when people talk about autism negatively and does not agree there should be a cure.
“This is not an epidemic,” he said. “Autism is not like cancer or AIDS. There is a positive side to autism.”
After college, Bula sees himself involved in the video game industry. He is interested in creating entire worlds based on some form of mythology and focusing on building unique characters.
He also sees himself working in autism activism.
“There are so many other Mariano Bulas around, and I would love to be a voice for people out there who can’t have a voice for themselves,” he said.
He said many people are overwhelmed about being on the spectrum and it’s very important for people to understand they are not alone.
He will join Club AMAR at a walk for Any Baby Can next month to benefit families who have been affected by autism.
There are many ways to spread awareness: wearing blue, posting on autism awareness hash tags and donating to local foundations dedicated to families affected by autism.
Club AMAR will hand out blue ribbons adorned with puzzle pieces in the mall Thursday to kick off Autism Awareness Month.
As new resources and technologies emerge, Bula is optimistic.
“This is something I cannot change,” he said. “I have to deal with this for the rest of my life, and I understand that I have the ability to do something great and magnificent.”
