April has been designated as Autism Awareness Month. It’s an opportunity for all of us to become a little better educated on the subject and to open our minds and hearts to the extraordinary challenges of that population and their families and caregivers.

What follows is an essay our niece wrote as she was heading to college four years ago. In it she shares some of her personal experiences of growing up with an autistic sister and describes how it has affected her own journey.

Perspective from the Spectrum

Click go our seatbelts as my sister and I hop in the car.

“Do you want to sit up front with me?” I offer.

My sister motions that she’d rather sit in the backseat and have me chauffeur her around like usual. We head over to Dairy Queen to celebrate the end of summer classes. I pull up to the drive-thru, order a Blizzard for myself and a cherry slushy for her, and drive us to the nearby park. Under a large oak tree sits a wooden bench, perfect for two sisters to enjoy their summer treats.

To an outsider, this may look like the typical big sister/little sister relationship. In reality, my older sister, Lily, has severe autism and an intellectual disorder. From a young age, I realized my sister was different. Walking challenged her through her early elementary years. Her vocabulary was very limited. She had a difficult time pronouncing words, which still holds true today.

Lily has always been a loud person. When she’s happy, she screams. When she’s frustrated, she screams.

I remember on several occasions my family going on public outings while I was in elementary school that ultimately ended in Lily having dramatic breakdowns. She cried and flailed uncontrollably. I just sat there helplessly, feeling embarrassed and ashamed of having a sister who acted this way. I didn’t understand why she did this or why she didn’t feel the same nauseating embarrassment that I did.

It also infuriated me that people stared at my sister like a zoo animal.

Wasn’t it obvious that she wasn’t a “typical” kid? Didn’t they understand that autism is a mental disorder that affects people’s social and behavioral skills? I couldn’t comprehend why people would be so outright unsympathetic.

Flashforward a decade. I have grown tremendously when it comes to understanding and helping Lily. One day this past August, Lily and I went to Target to buy her a new exercise ball. We reviewed the rules before heading in: hands down, inside voice, and mask on. We made a beeline for the exercise equipment aisle. She picked out a pink ball she liked, but it wasn’t the correct size.

In the size we needed, they only had one color: blue. I explained this to her, not thinking much of it.

Before I knew it, we were in the same predicament that haunted me as a child. She fell to the ground screaming, crying, and tearing off her mask. I panicked for a brief second before taking a deep breath and collecting my thoughts.

“Hey, Lily,” I said, trying to empathize with her frustration. “I know this isn’t the ball you wanted, so let’s come back another day. When we get to the car, we can call Mama if you want.”

I helped Lily off the floor, trying to comfort her. Walking outside, I noticed an employee staring, jaw dropped. My younger self would’ve had the urge to yell at the employee, but that would’ve been unfair. Not everyone has met a person with such significant disabilities.

Now, I just wanted to explain our situation to her, to educate her on special needs, and how these challenges look different in everyone.

In many ways, my relationship with Lily is very different from that of other siblings. We face many unique challenges. However, these obstacles have molded me into a better sister and more empathetic person. Plus, I have gained a lot of perspective.

I’ve learned to love someone who is different from me. I’ve learned what compassion and patience look like in action.

As I get older, I feel better equipped and more experienced in understanding my peers’ and community members’ varied backgrounds. At this point, I hope to pursue an undergraduate degree in Political Science. I believe this will help me reach my goal of creating positive change in underserved communities.

I want to make life better, easier, and more just for all. Lily has undoubtedly shaped much of my worldview and impacted who I am becoming.

A few more thoughts on the subject

Several years ago when our daughter-in-law and our son were dating, Allie said to me, “When I first met Bryan, I could tell that he came from a good family. But when I saw how the whole family was with Lily, I knew that he came from a great family.”

The truth of the matter is that it’s Lily who has helped all of us. Her soul is pure and loving and joyful. She delights in meeting people everywhere she goes, and she moves effortlessly to connect us all with each other. With no display of ego she seems to be living her life’s purpose better than most of us.

Although there’ve been countless challenges along the way, we focus on her incredible gifts. She has uplifted us all and expanded our hearts and helped us see a bigger picture. 

And we are all so grateful.