I am 18, a rising High School senior, and the younger sister of a 21 year old brother with low verbal autism. I am under a tremendous deadline. I am attending an out of state summer pre-college program at Ringling College of Art & Design, and must complete several AP summer art projects for my high school before I leave. Anthony interrupts me every few minutes to show me the cat, the same movie he watches every day, and to play video games with him. I don’t have time to stop, and Anthony does not understand. I struggle to stay calm and give Anthony a little time while I keep on schedule and hope to meet my deadline.
I just saw the story about Jake Brasch and his mother Dawn from the Twin Cities Pioneer Press. In the video with the article Jake was speaking about the challenges of living with autism and his mother shared her perspective on coping while also being supportive.
Jake’s story gave me bittersweet emotions – first, the sweet. It was nice to hear feelings articulated so clearly. Most often, the autism coverage I’ve seen is overwhelmed with conflicting data, references to “early diagnosis”, latest thoughts on treatments, and debates over possible causes. Basically, articles that talk about autism while telling us nothing substantial. It was refreshing to hear from people who live in the real world of autism, and can speak to it. Hearing Jake, I could almost channel what Anthony must be thinking and unable to say – his feelings being over-stimulated, his senses painfully heightened, and everyday being new and unfamiliar. It certainly explains Anthony’s repetitive behavior, which for us is maddening, and for him it seems endlessly fresh. He can enjoy the same things over and over again for years and never tire of them. He will constantly listen to songs and movies of the moment, and obsess over certain video games. Anthony’s OCD allows him to expand his knowledge of something, learn new techniques, find glitches, and discover hidden loopholes because his interest never fatigues. Endless repetition without exhausting his interest allows Anthony to totally connect and learn. We just have to cope with the endlessly endless repetition.
I loved how Dawn Brasch was so in tune with her son Jake. Her understanding and support was comforting. I have witnessed people that refuse to accommodate the autism, try to force their standards, and are infuriated when it fails. They don’t change their approach to ask “why” and the relationship suffers. My mom always talked about the all important “why” question. If you can figure out why Anthony does something puzzling or frustrating, we could manage it. I try to remind myself to do that when Anthony interrupts me a million times while I’m working for the same thing so I don’t go crazy. I try to remember that to Anthony I am still the same as I was when we were little. Even though he will never understand my obligations, I love that I will stay a kid forever with Anthony.
Now, for the bitter. Hearing Jake speak made me feel stranded in the low-verbal world. Jake spoke of his frustrations and in those moments, I could see Anthony. There was a look in Jake’s eyes that I had seen wash over Anthony’s face. Hearing Jake’s thoughts made Anthony’s world very real to me. It validated the feelings Anthony can’t express. The interview took Anthony’s non-conversational world and gave it dialogue.
Hearing Dawn Brasch talk proudly about Jake’s graduation was heartbreaking for me. For us, Anthony’s graduation in June was not a triumph, it meant aging out. It felt like a dead end to all that connected Anthony to the world. More than ever this year, Anthony seemed interested in his classmates, and tried to interact with them – and now it’s all over. I return for my senior year without my brother, and I’m anguished.
I have seen many videos featuring high functioning people with autism. I felt alienated from those reports because they didn’t resemble my life with my brother at all. This interview with Jake and Dawn Brasch felt more real to me. Even though Jake was much more verbal than my brother, he shared similar challenges. Jake put words to my brother’s thoughts, and helped me understand Anthony better. I will be a better sibling to Anthony because I got a precious window into his world. My only heartache is I can’t hear Anthony’s thoughts from Anthony. I wish I didn’t have to search for insight from people “like” Anthony – I wish he could tell me himself. I’m never certain how close I am. I can only guess, and never give up trying.
Seeing my brother’s world articulated through someone else strengthens my belief that there is not enough attention for low and non-verbal people with autism. There is insufficient help from the medical world. The focus remains on small children they feel still have “a chance”. Meanwhile, my adult brother suffers. If no help comes, I will spend a lifetime searching for answers through the distant voice of others. The puzzle piece of autism will become all too real for me.
Natalie Palumbo is a high school student, younger sister to a brother with autism, and Contributing Editor for Age of Autism. Visit her art website at Deviant Art.