by Tsara Shelton
About five years ago, I was throwing my hands in the air and hollering at my baby brother for ruining another of my calendars. My baby brother was 20 years old at the time, and I was tired of constantly having to replace the calendars in our home because he hated where the number five landed. Being the mother of four boys with busy schedules, I was trying to keep my life organized (if you know me, that’s quite funny!) and Rye’s obsession with where the five landed on calendars was making this quite difficult.
As I complained for the umpteenth time (probably more than that, I’m not exactly sure how many umpteen is), my brother apologized and told me that it hurt him to see the five landing on the calendar neither more to the left nor to the right, but rather in the middle of the surrounding numbers. It was then that I had an epiphany.
For the first time, and for a brief moment, I understood what it must be like to live in a world surrounded by people who understood one another’s problems, but never yours. I realized that for Rye, the physical pain he felt when looking at a calendar or seeing a rounded car was no less real than the anxiety I feel when looking at my bank statement and seeing a minus sign in front of my two hundred dollars. But for my pain, there are others who understand — friends and family members who get it and have been there. For my brother, there was no one who understood. No one he could talk to who would get it. For the first time, I felt true empathy for my brother — not pity or annoyance or a desire to help him change, but actual empathy for his pain.
I grew up the eldest of eight children, with four brothers on the autism spectrum. Of my four brothers, Rye and Dar are the most classically autistic. Rye is high functioning and Dar is very, very low functioning. For me to feel real empathy for the first time when my little brother was an adult — well, I felt rather horrible. And then I felt amazed. How is it that, despite my mother constantly telling me otherwise, I had never really noticed that I was asking for my brother to show empathy at every turn, while never offering him the same? How is it that, somehow, both Rye and Dar had learned to demonstrate understanding for others’ emotions, while I and others (except my mom) demonstrated mostly annoyance and suggestions for change when it came to theirs? How is it that my mom is always right??
When my mom adopted my brothers, I was less than impressed. Now I would be expected to help out with my new brothers; if I chose to go out with friends instead, what kind of person would I be? I had always been seen as the “nice” one. I went out anyway. I became the “nice” one at other people’s houses and pitched in a little at my own. I rolled my eyes when my mom insisted that the boys were able to feel the same feelings as I did, but that their challenges meant the feelings would show up in different places and would probably look different. What I saw was one brother rocking, stimming, growling, and hitting himself; another staring blankly in whatever direction he was facing, forever needing to pull up his socks; another threatening to beat up whoever was nearest, avoiding eye contact like the plague; and the little one repeating whatever you said while climbing the walls and putting his lips on heaters. I remember wondering why my mom would want these kids when even their own parents didn’t want them. Even the professionals in our world kept trying to tell my mom to stop getting her hopes up, that my brothers would certainly just end up in institutions and she should stop hoping otherwise. Why did my mom look at them and see adorable little people with challenges that they could overcome if they were only taught to believe in themselves?
Why was she the only one who would believe in them?
I admit to these thoughts because, on the day I finally understood what my mom had been saying all those years, it came to me: In order for my brothers to show empathy, they would have to know what empathy looked like. It would have to be modeled for them. My mom had always done that for them. But I never had. Not really. I have loved them, laughed with them, and snuggled with them. And as they all (other than Dar) became independent men, I have enjoyed conversations over coffee and given much advice on women. But I have rarely shown empathy for their very different — but very real — pain.
When my seven-year-old niece took Dar’s CD with various renditions of Through the Eyes of Love — which he listens to pretty constantly — and stapled it so we wouldn’t have to listen to it anymore, I laughed and promised Dar another one. Then, I chatted with my niece about how she felt hearing the same song over and over. It was her pain I empathized with, not Dar’s. And when Rye said he didn’t want to come with me to pick my kids up from school because it hurt him to see the school and all the kids doing well and being friends and having backpacks, I told him he was being silly and that I needed him to come with me because it was inconvenient to take him home. Rye empathized with my need for convenience. My autistic brother empathized with me when I had completely ignored his plea for empathy.
Dar has a leaky gut, serious bowel problems, an intention tremor, and other physical issues he is almost always dealing with. Rye feels sounds, sees things floating in the air around his eyes (poo flakes, he calls them), and wants friends but doesn’t know how to be one. My brothers are always dealing with some issue I can’t understand, in the same way that they can’t understand my issues. But they try. When I ask them to change, to be different, they try. When I tell them to care about me and my needs, they do. They are amazing people. I want to be more like them.
How can we say that autistic people have no empathy? Why do so many close their eyes to the constant empathy they show for us neurotypicals and our desire to live lives of convenience and normalcy? Ever since the day of that epiphany, I have changed, just a little. I still ask my brother to overcome his challenges, just as I ask my children to overcome theirs, and myself to overcome mine. But I also empathize with the huge extent of the challenges.
My autistic brothers taught me empathy. And they were unbelievably patient.
About the Author: Tsara Shelton is the mother of four wonderful boys. Her two youngest children exhibited symptoms of autism early in life. Having four brothers who were on the autism spectrum made her family uniquely qualified to recognize the symptoms and to create an at-home therapy approach. The boys never did receive an official diagnosis. She now spends most of her time either hanging out with her kids or making amends for her crazy teenage years by helping her mom, Lynette Louise, spread autism awareness.
My Autistic Brothers Taught Me Empathy was written expressly for Autism and Empathy.