A life dictated by Autism Spectrum Disorder
UB students with siblings who have autism share their experiences
Mai Bargovsky (right) sits with her brother Mikey. Mikey has low functioning autism. Courtesy of Mai Bargovsky
Two years ago, in the middle of January, Mikey Bargovsky went missing. His family searched for him, shouting his name through the streets of their neighborhood in Staten Island. But they knew he would not respond to their cries.
Half an hour into the search, his family found him in their neighbor's backyard. He let himself into their pool for an afternoon, mid-winter swim.
Bargovsky has autism. He falls high on the spectrum and is low functioning, so he has "no sense of fear or what is right and wrong," according to Mai Bargovsky, a freshman intended nursing major and Bargovsky's older sister.
April is National Autism Awareness Month. One in 88 American children is diagnosed with Autism Spectrum Disorder (ASD), according to the Centers for Disease Control and Prevention. But few studies are devoted to ASD's effects on siblings of autistic children. Of the 839 studies reported within the past four years in the Journal of Autism and Developmental Disorders, four were devoted to siblings, but the focus of those studies was genetic risks and not life experience, according to a 2012 Time article.
Though there are no statistics, a number UB students have autistic siblings.
When Mai was 2 years old, her brother Guy was born. When she was 4, he was diagnosed with Asperger syndrome. She had to share a lot of her parents' attention with him, though he was not low functioning. But it wasn't until she was 5 years old that her world was completely recreated.
When Mai was 5, Bargovsky was born. Her parents' love and time had to be split amongst three children now, but the attention could not be split evenly. Rather, the demand of having two siblings with autism left Mai with little to no attention, she said.
Mai remembers attending her brother's home instruction when she was 6 years old because she was so jealous of the attention he received.
"I never got to have a 'normal' family," Mai said. "I have two autistic brothers. We can't leave the house without stressing out about how Mikey will behave. He's almost 12 and he still cannot speak, use the bathroom without assistance or be left anywhere unattended."
Bargovsky needs a home aid seven days a week. This can be difficult for the rest of the family, Mai said. Everyone has to think twice before speaking, as well, as to not trigger any negative feelings in him because they do not know what he is actually thinking or feeling the majority of the time.
"Something will tick him off and because he can't speak we don't know what it is," Mai said. "This will lead him to biting himself and hurting those around him."
Her parents constantly remind her and Guy that Bargovsky did not choose to be the way that he is and to have patience with him. Her family never had a sit-down meeting about autism and what it meant; rather, they dealt with their situation one day at a time, she said.
When Brittany Herbert, a sophomore legal studies major, was 8 years old, her brother Matthew was diagnosed with autism.
Matthew was 2 years old at the time. He was born three months premature, which negatively affected his brain growth and development, Herbert said.
Herbert had experience with knowing how children with ASD act because there were several students with the disorder at her elementary school.
"However, living with an autistic child, I learned, is much different than just seeing them sometimes in school," Herbert said.
Herbert spent her childhood with therapists constantly at her house working with Matthew on his motor and social skills.
When he was old enough for pre-school, Matthew took a bus to a "special school tailored for kids like him," Herbert said. It was located about 30 minutes from their home.
Matthew is 11 years old and is one of the most "lively, fun-loving and smart" kids Herbert knows, she said. He has an affinity for knowing random things about the world.
"You can ask him what the tallest mountain in a certain country is and he will know," Herbert said. "Often, when I look at what he's doing on the computer, he's researching such things."
Herbert said Matthew is significantly better at math than she was when she was 11.
Despite these positives, he struggles socially, Herbert said. At times he can hide his autism well, but other times it's clear he has a disorder.
He does not know physical boundaries and often touches people he does not know in class or in public.
Herbert remembers a specific incident when Matthew kissed his kindergarten teacher on the cheek. This left Herbert feeling embarrassed for him, but as she grew older, she began to understand the scope of autism.
She enjoys volunteering at autism events like the Special Olympics. She said her brother has also taught her not to be judgmental of people who act improper in public because there may be an underlying reason for their actions.
Herbert believes autism is misunderstood. She said she would love to see initiatives on campus to help inform the public about autism.
Mai also said if she knew of an awareness group at UB, she would join it. She has three puzzle pieces, a symbol for autism, tattooed on her foot. She hopes some day the pieces can be stuck together, symbolizing a cure or ending to the disorder.
Shelby Yacovone, a freshman psychology and political science major, also has a younger brother with autism but is not involved in anything related to ASD on campus.
Being at UB is the only time she has the ability to be herself without her brother's disorder surrounding her life.
"Basically, my entire life has changed since my brother's diagnosis," Yacovone said. "At a young age, I had to realize it's not always about me and I couldn't compete with my brother for attention."
Yacovone knows her adult life will be different from a lot of people's. Andrew is low functioning autistic - he is verbal, but only communicates when he wants or needs something.
Because her brother is low functioning, she is going to become his primary caregiver when her parents no longer have the ability to be his guardian.
Andrew is 17 years old and Yacovone is 19 - the two are 16 months apart.
When Yacovone turned 18, her family went to court to add her as his third legal guardian in case anything were to happen to his parents. Otherwise, he would belong to the state because he's incapable of taking care of himself, she said.
She will be in charge of his living situation, finances and future caregivers. This task is daunting and filled with pressure for a college student, Yacovone said.
When he's not able to verbalize his feelings, he grows frustrated and angry, which affects her entire family. Her parents have found positive outlets, though, for Andrew.
Every day, when Andrew gets home from school, Yacovone's father takes him swimming or running. Unlike many children with ASD, Andrew loves to be active, Yacovone said.
She remembers telling her friends that her brother is different and he just can't help it at a young age during play dates and at school.
Megan Weal, a junior American studies and literature major and assistant arts editor at The Spectrum, has three siblings with autism.
She has an older brother, who is turning 30 this year, and two younger sisters, who are 14 and 17 years old. Each sibling has a different level of autism. But Weal does not believe one can be labeled "more severe" than another.
Her brother can't talk or make decisions for himself. He needs constant attention. At the age of 13, Weal took on a lot of responsibilities, including getting him up in the morning and assisting him with normal day-to-day tasks.
Weal said on the outside, her brother's case may seem the "worst."
"But what is more prevalent in my younger sister, who is 17, is that she is aware of her autism and she constantly faces the torment of knowing that she is 'different,'" Weal said. "So not only does she battle with the mental tribulations that autism comes with, she also has faced severe bullying and fully understands her disability."
Weal finds this aspect of autism is often overlooked. From her experience living in a house dictated by the disability, more mental and emotional support needs to be given to people living closer to the outskirts of the autistic spectrum, like her sister.
Weal said autism is a disability with little attention paid to it, yet it is still stigmatized and mocked by a lot of people. Mai hopes someone starts a group at UB focusing on supporting the family members of those with the disorder.
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