One parent whispers, “That retarded child needs to shut up.”
Every audience member in the music auditorium during my orchestra concert glared towards the young boy who wouldn’t stop clapping and making high pitched noises. By the end of the concert, everybody knew that the boy who banged his head when the music got too loud, or cheerfully shouted during the middle of a song when he got excited, was my brother.
My brother, Ivan, was diagnosed with acute autism before I was born, so I never knew he was different until I grew older.
Autism is a developmental disorder that affects communication and social interaction skills and is often characterized by intensely repetitive behavior. It can range from high-functioning syndromes to severe learning disabilities and mental retardation. In fact, one in 88 children in the United States has some form of autism, according to the Centers for Disease Control and Prevention.
However, at least twice as many children confront the problems of having an autistic brother or sister. And for siblings, it often adds a layer of pressure to be the “superkid” in the family. We are expected to grow up faster than we want to.
When I was 8-years-old, it began to dawn on me that society didn’t understand my brother’s special needs. Ivan lacks the normal motor skills that I possess, so tasks like brushing his teeth are quite challenging. I had to learn at a very young age how to put someone else’s needs in front of my own because I had to be the “responsible” one.
At times, it frustrated me to make these sacrifices because it didn’t seem fair. I sometimes resented the fact that all the other kids’ parents were at their concerts and performances, but mine weren’t.
But I knew that that my brother couldn’t help being disabled.
Like many with autistic siblings, I try to stay out of trouble and to not be the one my parents have to worry about.
Katherine Stratton, a Carlmont senior, has a 15-year-old brother named Tom, who was diagnosed with Asperger’s, a form of high-functioning autism, at the age of three. She explained the responsibilities she’s had since she was young.
“I’ve had to learn how to handle situations where he would overreact and stuff, and be responsible for my youngest brother sometimes if my parents were dealing with Tom,” said Stratton.
High schoolers are already overwhelmed with AP classes and extracurriculars, but those with autistic siblings have found limitations on what they can and cannot do.
I’ve been cautious of who I invite to my home to work on school projects, because I don’t know how they would treat my brother. I’ve been concerned if my friends would see me in public and pick up on my brothers‘ strange tendencies. I’ve found myself frustrated over not being able to communicate with my brother and even being the target of aggressive behaviors.
However, it’s quite easy to develop a warm, loving and close relationship with your family because of an autistic child. A 2006 review of the research in the Journal of Intellectual and Developmental Disability found that while some siblings had “deleterious outcomes” coping with an autistic brother or sister, others found siblings who were well adjusted.
Relating to a sibling who has autism can be complicated. Normal sibling rivalry doesn’t work, because it can never be a fair fight, especially when the only form of communication is sign language. Instead, we help each other to learn and grow.
I’ve been pointed, laughed, and stared at for holding my brother’s hand when we cross the street. But while I was giving Ivan a hand with everyday simple tasks, such as dressing and eating, he was teaching me about patience, understanding and advocacy-the traits that all journalists must embody. These experiences have taught me to become sensitive to the struggles and disenfranchisement of those who society deems as different.
Although having a disabled child can be a tremendous burden on a family, a 2007 Harvard Review of Psychiatry article noted that some siblings of autistic children are discovering that the sibling experience can produce long-term benefits. It was reported that people who grew up with autism in the house tend to be more empathetic and learn to handle difficult situations and negotiations better.
Stratton stated that while she was first hesitant to be in this community because she was uncomfortable around perceived disabilities, she realized she was learning valuable lessons of acceptance and tolerance from her brother.
“One mom told me that Tom was ‘unfit for Heaven.’ Kids would mock the unique way Tom flapped his hands when he got excited. But Tom is funny and caring and he has many gifts, like a near perfect memory,” said Stratton.
Duty and the burden of responsibility aside, I’ve also had some wonderful moments with my brother. There aren’t a lot of siblings who can laugh at their brother for turning off all the computers at the public library. Not to mention I only have to wait in line for five minutes for any ride at any amusement park.
As we adjust to absorb autistic children into our community and strive to support their unique and medical needs, let’s not forget the siblings. Not every step in this journey has been easy, but I know that my brother has helped me become a better person.
Autism isn’t a disability, but rather an ability to view things in a different way. As for myself, the challenges continue to evolve, and I suspect they also evolve for many others.
But for now, when it’s 6:30 in the morning, and Ivan is waving “Bye, Bye” in the car and laughing, I can smile because I know it’s going to be a good day.
