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An Ode to Autism Siblings, Then and Now

An Ode to Autism Siblings, Then and Now

An Ode to Autism Siblings, Then and Now

by Theresa Basile

As a nine-year-old in 1993, I struggled to explain to my classmates what I meant when I said my brother was autistic. The best I could say was that “he lives in his own world.” It was a concept I barely understood myself and still tried to make sense to other fourth-graders. I knew that my brother couldn’t talk to me, play with me, or even fight with me the way other kids talked, played, and fought with their siblings, but I couldn’t explain why or how.

In 2018, the siblings of the students at Brooklyn Autism Center have more tools at their disposal to explain autism to their friends. Rates of autism are much higher than they were in my childhood, with 1 in 2500 reported cases of autism in the early 90s increased to a dramatic 1 in 68 cases by 2012. Awareness and understanding of autism has deepened as rates have gone higher, with more people having family members or friends who know someone on the spectrum.

And yet, even with the benefit of that higher awareness, describing autism to a peer remains a challenge. Older siblings, already naturally protective of their younger brothers and sisters, struggle to put their siblings’ uniqueness into words. Danny (age 20) found himself awkwardly explaining his brother’s autism after inviting a friend over from school and coming home to see a ten-year-old Dylan running around with his clothes off. Paulina (age 13), with two younger brothers on the spectrum, focuses on Mario (age 11) and Michael’s (age 10) sensory overload when describing autism to her friends: “Imagine you are in your own personal bubble. The world looks so big. The people around you can be so loud and hard to understand. It’s so confusing!”

Younger siblings come from a different perspective. Never witnessing their siblings’ initial regressions, they spend their first years thinking their big brother or sister’s behavior is typical, only to learn that the rest of the world doesn’t see it that way. Some keep their explanations short and simple; Caleb (age 10), younger brother of Judah (age 13), says, “I describe autism by saying his brain works differently from ours.” Sean, Greta’s youngest brother, only tells his friends that his sister is “different.” Luke (age 11), in between Greta (age 14) and Sean (age 8) in age, developed a more complex explanation as he grew older: “I generally say autism doesn’t mean she’s not as smart as anyone. It means she has many disadvantages.”

Perhaps the most unique explanations come from the twins of children on the spectrum, seeing someone their same age (and sometimes with the same face) growing up very differently than they do. Kristina (age 20), Isabella’s twin, simply says autism is “part of who my sister is” and counts herself fortunate to know friends and classmates already involved in activism for people with disabilities. Meadow (age 11), growing up alongside Brayden, says of children with autism, “They have an amazing mind and imaginations but you can’t discover that about them until you get to know them better.”

Jake (age 17), Ian’s twin, offers the Google definition of autism (“a mental disability that impairs people’s abilities to communicate and interact with others”), but also explains why he finds it inadequate: “With Ian specifically, I tell people that he isn't very communicative. I think it's impossible to adequately describe autism in general because each kid is so different, so I don't dwell on explanations.”

Explaining the nature of a family member’s autism is a multifaceted task. We have to paint a larger picture of what autism is, describe how autism affects our loved one in particular, and reiterate that autism is a spectrum and no two people on it are the same. Most importantly, we have to capture the person behind the disability, emphasizing that autism is a part of who our loved one is, but does not define them.

This is difficult for parents. It can be monumentally difficult for siblings. At a young age, we experience similar feelings of pain and confusion as our parents do when our brother or sister is diagnosed, and we’re faced with the weighty task of understanding our siblings’ struggles long before we understand who we are ourselves. Kristina could only guess why her twin Isabella wasn’t showing the same interest in her favorite activities and had to make an active goal to find different ways of bonding with her sister. Paulina had to face the disappointment of realizing that neither Mario nor Michael would go to school with her and play with her the way she’d hoped.

We learn quickly to cope when our siblings do things we don’t understand, even when their actions hurt us. My brother broke my favorite music cassette that I listened to every night before I went to sleep. Years later, Danny’s brother licked the Derek Jeter signature off of his prized autographed baseball. Meadow will struggle to play playground games like Tag with Brayden because he might start shoving his peers, not understanding the rules. Then and now, we struggle with a mix of complex emotions - anger at our siblings, combined with guilt for feeling that anger because we know our brothers didn’t mean to hurt us.

We learn at an early age that our sibling is going to be the center of our family and require extra attention from our parents. Sometimes the extra attention feels like favoritism and leaves us feeling lonely, but it doesn’t take us long to find our own special place in the family by becoming our sibling’s best protector. We might step into a room like Jake does, announcing “‘my brother has autism!’ in an effort to buffer any impending judgment,” or simply be on guard to defend our sibling against potential ignorant reactions from the public.

We understand people’s differences and gain a larger perspective through interactions with our siblings. Sometimes that larger perspective inspires us to take an active role in the larger autism community. We may, like Danny, fundraise for organizations that help people on the spectrum and become a mentor to children with autism. We might, like Paulina, Luke, and Sean, sign up for BAC’s 5K several years in a row to fundraise for their special siblings’ school.

We gain an appreciation for the small joys and accomplishments in life. Caleb embraces the unique games he invents with Judah while Danny successfully teaches Dylan how to play catch. Jake feels pride when Ian initiates a conversation with him, and Kristina marvels at Isabella’s superior athletic skills, particularly in basketball. Luke and Sean cheer when they teach Greta how to fist-bump, and Meadow praises Brayden when he successfully saves money to buy something he wants. Paulina appreciates Mario’s skills at crafting art projects and Michael’s amazing memory of movie statistics. My own, minimally verbal brother is almost thirty, and I only recently discovered to my delight that he knows how to count to ten in Spanish.

And sometimes, in ways we don’t expect, our siblings become the best source of comfort we have. Luke and Sean can find reassurance from a simple hug or cuddle from Greta. Paulina says both brothers are her best friends, that Mario will make her feel better on a bad day with a hug and kiss and Michael will crack a joke to cheer her up. After experiencing a particularly difficult year in the rite of passage known as “high school,” Jake found that Ian gave him support in ways that no one else could: “He is not judgemental or insecure about the things which universally plague my peers...Ian’s world comes with many profound burdens, but it also holds certain truths about what really matters in life, and what shouldn’t.”

In 1993, a sibling support group existed at my brother’s school, but I was the only student in my class who knew what autism was, and had to get most of my peer understanding through fictional characters in books like Betsy Byars’s The Summer of the Swans.

Now, peer socialization programs like BAC Friends exist to connect children with autism and their siblings to neurotypical peers. If a school doesn’t have an autism awareness club, siblings feel empowered to start their own as Danny did. Brooklyn Autism Center will send staff to our students’ siblings schools to complete workshops on autism awareness and understanding.

The world has changed to better help “autism siblings,” but we haven’t changed. We remain ambassadors for autism understanding, fiercely protective of our brothers and sisters, and we love them with a devotion that shapes who we are. Our Autism Awareness Month lasts a lifetime.