I’m 21, a junior Motion Design major at Ringling College of Art and Design, and the only sister to an older brother with low-verbal autism.
It was a busy summer. I spent most of it working on freelance animation for musician Jim Hossick, known affectionately in the D.C. Metropolitan area as "Kidsinger Jim". I first met "Mr. Jim" when I was in preschool with Anthony. Jim performed at our school, which was a center for special education with an integrated pre-kindergarten. During one performance, one of the special needs kids reached for Jim's guitar. Jim leaned in so he could hold the tuning keys, and just kept playing. True tolerance is so hard to come by. My mom still can't recall that moment without tears. I wanted Jim to be proud of my abilities and surpass his expectations. He was overcome. I presented “Daddy Longlegs” to my animation teacher, and he was overjoyed with the production value. Surpassing his expectations, too, meant everything to me.
When I was working, Anthony would repeatedly say, "play it", and attempt to sing along. I’d never seen him do that before. The fact he was invested in my animation weighed very heavily with me. Only a select few things make it to his "over and over" list. Whenever I make art, I try to show it to Anthony. He’s a good bellwether for what is visually appealing. Anthony is the one person in my life who remains consistently kindhearted and sincere. I think of him for comfort when I'm overwhelmed by the world exploiting conflict.
There is a part of me that always feels scrutinized for caring so much about my family, especially my brother. Despite attempts to explain Anthony's situation, someone will misconstrue my concern as preoccupation and try to "wean" me off of being "so sensitive". Most making that assumption barely know me, let alone Anthony. They aren't interested in hearing any details from me, but want to persuade me to conform to their idea of what is important. They don't want to be bothered with the details of what makes my concerns so different.
Ten years ago, when I would mention my brother had autism, no one knew what that meant. I would try and explain his condition, and they were still confused. Now most associate the word autism with someone verbal with savant skills and manageable social quirkiness that can be "pushed" toward higher performance. They jump to the conclusion my brother must be verbal too, and I worry too much. Before letting me explain his limitations, I've been judged.
It’s exhausting having to clarify each and every time I'm questioned that “NO, my brother is low verbal” and “NO, he can’t be in a group home situation because he can't report” and “NO, my parents aren’t forcing me to take care of him in the future" and "YES, I choose to because I love him and need to know he’s safe." I really wish I was making this up, but I seem to answer the same questions every time. It boggles my mind that I'm met with scrutiny just for caring about my brother's safety. I never thought being considerate would be daunting for people to understand or for me to explain. It's frustrating to be questioned when it does not factor into their lives in any way.
As a sibling facing the realities of caregiving, it breaks my heart to witness attempts to define the condition as a novelty to be cherished and not questioned. These ideas are expressed as "celebrating neurodiversity" and any attempts to improve quality of life is seen as "tampering". I've seen many with autism who are gifted with exceptional abilities, but they function at the very highest end of the spectrum. My brother aged out of special education at 21 and can't carry on a conversation. He can only answer simple multiple choice questions. If you asked him to describe a favorite memory, he couldn't do it. Anthony can't formulate spontaneous language. He wouldn't even understand the question.
It is irresponsible to ignore those without communication who suffer with sensory overload, chronic pain from digestive issues, and limiting food allergies. The low and non verbal can't advocate for themselves, so their families must fight for them. Dismissing their suffering and attacking their caregivers is nothing less than cruel. There are many colors of autism. All of them need to be considered.
A final point of note...
My uncle died June 6th, 2015 of cancer. He was one of my mom's two older brothers, and had been struggling with cancer for many years. My dad stayed with Anthony so my mom could attend services without any concern for Anthony's comfort. She could rest her mind about Anthony, and it was a big relief to her. I went with my mom for moral support. I stood silent watching her touch her brother's coffin to say goodbye. I couldn't help but think of how similar it all was to when my grandfather passed ten years ago. Anthony couldn't be there either. My mom knew he couldn't handle the services, so he stayed with family friends. It added to the sadness that nothing had changed in ten years that would have made Anthony's attendance possible. For many of us, autism is a constant that never takes a break, even for death. Before any grieving could begin, my brother's autism had to be managed. That brings concern to a whole new level. It's a sobering reality that has to matter.
NAtalie Palumbo is a Contributing Editor to Age of Autism.