Having a Sibling with Autism Made Me A Better Doctor

My brother has a severe form of autism and it wasn't always easy for me to understand his condition growing up but, through my parents, I learned how to fight for him—and I always will.

Two Black children wearing crowns smile

When I was little, I would look at my older brother's Ohio State Buckeyes sweatshirt, imagining that he would one day attend college there. He wouldn't—it was just a dream. My babysitter told me that if I prayed hard enough, my brother would be cured. Miracles happen all the time, she said. Eight-year-old me was not convinced. Mom had already explained to me that my brother would not "get better," and that it was OK to be sad about it sometimes.

Plus, my babysitter also believed that my toy Furby, Lucy, was demonic so I doubted her judgment.

Once, Mom took me to a group for siblings of individuals with an autism spectrum disorder. I remember eating fruit snacks, but I don't recall much else. We were supposed to talk about our feelings, I guess, but I didn't know what to say yet. I knew my brother was different and not accepted in many social circles.

Once, Mom and I unloaded groceries as my brother sat in the car, gazing out of the window. A lady in the car next to ours scowled, then asked Mom, "Why is he staring at me? What is his problem?" Mom returned her gaze with a calm expression, but behind it was fierce resolve. "He's autistic, and honestly, he probably isn't even looking at you."

Mom always has the best comebacks.

And they come in handy. Because despite the fact that my brother has a severe form of autism and cannot live independently, he still can't catch a break from racism. My brother lives in a house with two roommates and comes home on the weekends.

Once, a white neighbor accused my brother of breaking the lights in her front yard with a group of his friends. She'd seen someone who "looked like my brother." My mom responded to this racial profiling with grace. "My son is severely autistic. I wish he did have friends, but he doesn't." The neighbor's face turned beet red. She did not bother us anymore.

But others did.

A few years ago, my brother was thrown on the ground by a security guard at the local science center when he began to get overstimulated. Despite the fact that his paraprofessional screamed, "He is autistic! I am trained to handle him! He is fine!" the security guard ignored her. My brother was handcuffed so roughly that they left bruises on his wrists for weeks.

And his situation is not unique. Individuals with autism, especially Black individuals with autism, and other disabilities, are more likely to be harmed, and killed, by police than their white counterparts. And it doesn't stop there. Black children are less likely to be identified as having autism in the first place, and experience significant delays in diagnosis (and treatment) compared to white children, due to racism. I know my parents were shaken by the event, but they handled it with incredible resilience.

In fact, my parents have always modeled an admirable level of adaptiveness when it comes to my brother. I wish that they didn't have to. But I, on the other hand, wasn't always mature or understanding about my brother's difficulties.

Once, I got really angry. "I wish Eric and Kevin were my brothers instead!!!" I yelled, referring to two boys I was friends with. I assumed that my brother would not have the ability to comprehend my statement. I assumed because he couldn't talk much, that he couldn't understand much. But he stopped what he was doing, picked up a ball, and threw it directly at me. Mom looked on with a smug expression.

We both knew I deserved that.

Everyone travels a different journey when deciding how to share that their sibling is disabled. Common questions like how many siblings do you have? become more complicated. Your stomach may drop, and your heart rate might quicken. Because that question leads to more questions and the eventual realization that your sibling has special needs—that they are not following the expected life trajectory. They are not in college or working full-time. As time goes on, they do not get married. They don't have children. And once you share this, there is often that awkward silence from the other person. They'd just been trying to be friendly when they'd asked about your siblings. They hadn't expected to start a conversation about autism.

So, I used to dread that question—avoid that question by any means necessary. But the question follows you throughout life. You can never really escape it. But I tried anyway. So, growing up, most of my closest friends never even knew I had an older brother. My parents never made me feel bad for my avoidance. "You will find your own way to talk about your brother," they would say.

And one day, I did.

I wrote a narrative in my sophomore English class about my brother for the first time. I decided I would read it aloud to my class because I was ashamed of my cowardice. I wanted to feel comfortable and proud of my brother, and not be afraid to mention him. But up until that time, my love for him had been selfish. I had put my comfort first. I wore an autism t-shirt and read my essay aloud. Then, I waited for the sky to fall. Or, for the classroom to implode. Something had to happen once my classmates found out that I had a brother with autism. But nothing did. And even if it had, I realized that I didn't care anymore.

Once I let go of other people's judgments, I could fully love my brother selflessly, as my parents did, instead of selfishly.

When autism is mentioned, it is often romanticized, maybe even sensationalized. We hear stories about autistic individuals with special talents or see shows like the Good Doctor but the reality is that 1 in 3 people with autism have a severe form and may be non-verbal—and they rarely see themselves represented.

My brother has no special talents that will make the local news. He uses a few words and communicates by responding to simple questions or pointing at things he wants, but he needs constant supervision. He doesn't have friends except for his family, and he will not be able to live independently.

But my brother eats my poorly baked brownies even when they come out rock-hard. He likes long car rides and playing in Mom's long, thick hair. He likes touching the bridge of my nose and laughs when I scrunch up my face. He gets upset if Dad does not put on his seatbelt as soon as he gets in the car and will firmly state, "Seatbelt please." He pushes Dad's hat down firmly on his head if he has it on too loosely. He says the prayer when we ask him to. "Thank you, Lord, for this delicious dinner. Amen."

I wish that my brother had a better life: A life where he could tell me if he is happy or sad, where he could visit me whenever he wanted to, get married if he wanted to, and have a fulfilling career if he wants to. A life where he gets to choose how his days go, instead of relying on staff to shape his days for him. A life where he did not need constant supervision. But, I wouldn't trade him for anyone else.

Loving a disabled sibling is a limitless love. It is a love filled with advocacy, protection, and patience. My parents, my brother's guardians, advocate relentlessly for my brother to receive adequate care, because there aren't many programs out there for autistic individuals like my brother, especially as adults.

When the COVID-19 pandemic hit, his primary care physician did not bother to coordinate his vaccination, even though we wanted him to get it. It's ironic—as articles were coming out about vaccine hesitancy in the Black population, my brother was experiencing vaccine denial. Clinics turned him away because he required oral sedation to tolerate the injection. My parents, a busy pharmacist, and a psychiatrist were working in a medical system overwhelmed by COVID-19, on top of being worried about my brother every day.

I wrote an op-ed in TIME magazine calling out the ableism in the medical system that had resulted in my brother remaining unvaccinated. People read my article and arranged for my brother to be vaccinated within days. I felt relieved to help my brother and overjoyed that I could help support my parents, too. "Sometimes, you just get tired of fighting," Mom said. "That's why you have me. I'll fight when you get tired, Mom," I replied.

One day, I will take over my brother's guardianship from my parents and let them relax, knowing that my brother will be in good hands—my hands. I am committed to taking care of him for the rest of his life, and I am happy to because my brother has given me so much.

My brother taught me patience. He is my writing muse. When I was accepted into Yale College early, I received a handwritten note from my interviewer about my personal statement and how phenomenal it was—because it was inspired by my brother. Getting into Yale wasn't just my victory, it was ours. And when I chose medicine, my brother made me into a physician who even has the wherewithal to recognize ableism and racism in the medical system.

But it was Mom and Dad who ignited my fire to fight them.

It was Mom and Dad who showed me how to fiercely advocate for my brother—how to boldly be his voice without succumbing to bitterness and anger. Having and loving a sibling with special needs, undoubtedly, made me a better person—a better doctor—because of my parents.

Amanda J. Calhoun, MD, MPH is an Adult/Child Psychiatry Resident at Yale Child Study Center/Yale School of Medicine. Dr. Calhoun is also a Public Voices Fellow of the OpEd Project at Yale University.

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