Life with Jackie - Learning to Adapt

To commemorate Jackie and Autism Awareness Month:

My sister, Jackie, is on the autism spectrum. I was in sixth grade when my mom first told me that my sister had autism. And to be completely honest, I had no idea what my mom meant. To me, “autism” was just a word, a label. That’s it. There was no true meaning behind this word for me.

Before Jackie was diagnosed with autism, she was a talkative and interactive baby. She loved running around the house, saying things like “ma ma” or “pa pa”, and sometimes she even enjoyed posing in front of a standing mirror we owned. In fact, I clearly remember this one time when I had decided to make a TikTok video, and Jackie was dancing to the song. She was happy, I was happy, and my family was happy. However, things began to change quickly when we started to notice changes in Jackie. The first sign that my mom noticed about Jackie was her speech regression. For the longest time, after she spoke her first words, Jackie was the loudest one in the house. All day long, she would usually blabber about nonsense. After a while, she suddenly changed and became the quietest of the household. On top of the speech regression, Jackie stopped responding to her name. Before, when I would call her name, she would turn around and use her two black, beady eyes to stare me down. But as time progressed, Jackie stopped acknowledging me completely, and even after calling her name several times, I would receive no response. Of course, I found this odd, but I did not pay much attention. Since Jackie is the only sister I have, any suspected abnormalities seemed like normal sister behavior to me. Little did I know, Jackie was showing symptoms of autism.

Even as months went by, Jackie never returned to her old self. She continued to act like a stranger, never giving me or my family any attention. Then, after numerous visits at the Children's Hospital of Philadelphia and hundreds of hours of worrying, the doctors broke the news to my mom: Jackie was autistic.

This news was not well received by my family, especially my mom. In fact, I still remember her puffy eyes and red face when I entered her room, seeing her in tears. And when I found out about Jackie’s condition, I was stunned. I wasn’t upset, but rather caught in a state in which I didn’t know how to react. What did this word “autism” mean? Was it just a label? What is a person with autism like? Do I have autism? I was confused. Later that night, I did a quick Google search and found that 1 in 36 children are diagnosed with autism. That’s less than 3%. This hit me hard. After looking at the symptoms and side effects of autism, I thought to myself, Wow, so this really is reality.

After that, I knew that as Jackie’s sister, I would need to play a large role in her life. Unfortunately, I have never interacted with autistic children, let alone be the sister of someone who is on the spectrum. So, how was I going to help Jackie? Initially, it was a struggle. Now that I knew Jackie was unable to express her feelings thoroughly, our old customs needed to change. Instead of communicating with my sister straightforwardly (even if it means excessive baby talk), I would now need to find an alternative way to understand and talk to my sister. Initially, my family and I had a hard time finding the solution as we struggled to comprehend her behavior. Every little mishap would turn into Jackie throwing a tantrum and uncontrollably screaming for the next twenty minutes. So, for the next few years, life was difficult. Despite that, Jackie and I had our fun moments. Unfortunately, each happy memory created was shortly followed by several unhappy situations. For example, children with autism are often found to have short attention spans. Therefore, whenever I felt like Jackie and I were having good quality time, the sense of achievement I felt when I thought was a new milestone for Jackie soon shattered due to her short attention span. We would be building puzzles together, but Jackie’s mind was never focused on the puzzle. She would put one piece on the board, grab the next one, and place it blindly. If she was lucky, the piece would fit. However, oftentimes, it did not, and Jackie would get frustrated, immediately distancing herself from the activity and switching her attention to something else. All I could do was stay by her side and hope for the best.

An image of Jackie :)

Nevertheless, after all of these years of triumph and disaster, I can proudly say that my time with Jackie was not wasted. From her initial diagnosis, to the long days during COVID where human interaction was simply impossible, and then to the present, Jackie has improved so much. Although she and I may still struggle with communication and occasionally bicker, we have come a long way. Unlike before, Jackie and I are able to share heartwarming memories without the instant bombarding of disasters. Never in any universe would I choose someone else over my sister. Jackie may be different from other people, but to me, she will forever be my sister, and I will always love her for who she is.

Note to Families with Children on the Spectrum:

Please do not ever feel discouraged if you have a child who is diagnosed with autism. It might be difficult to communicate or understand them, but it is important to keep in mind that although they may not express their feelings in a way that you would like them to, that child still relies on you and loves you with all their heart. Each year, more and more children are diagnosed with autism, so you are not alone in the struggle. Stay strong!

Jane Hu - Author

Aarna Dharmavarapu and Avantika Palayekar - Editors