“The unheard stories of Autism: A sibling’s journey”

My baby sister just turned 20 last week. Wow. I can’t even wrap my head around the thought of it. I’m sure most older sisters feel the same way I’m feeling right now. Seeing our younger siblings growing up and becoming their own person is mind blowing because in a way, we still hold onto the memories of when they were little. At the same time, I think deep down it scares us a bit because we are getting older. But my sister isn’t like most younger siblings; she is autistic. She might be 20 now but mentally Ari still acts like a young girl; in love with her barbies, Disney princesses, imaginary friends, all the stuff we left behind in our childhood. Growing up with a sibling who has autism is a unique and enriching experience that comes with its own set of rewards and challenges. My personal experience on the matter has taught me the value of patience, empathy, and unconditional love. Sure, I have gained a lot of wisdom because of it, but at the same time I’ve felt a lot of sadness, worries, fears, guilt and shame all throughout this journey. This is something I don’t share with anyone other than my partner which leaves me feeling alone most times.

When I first found out my sister was diagnosed with Autism, she was 3 years old and I was a sophomore in high school. If I’m being honest, I didn’t fully understand what it meant when our mom called me with news that “Arianna has autism”. The tone in her voice when she said those words made me feel sad but mostly confused because I had never even heard the term before. But truthfully, I was dealing with a lot of unresolved trauma in my teenage years that I dissociated from my then reality. I didn’t fully register what was happening in our lives the first 2 years after the diagnosis. As I started to pay attention and noticed how “different” my little sister was it finally hit me; she behaved in a unique way that I’ve never experienced or seen before. Her lack of speech made me realize at an early age I was going to become one of her advocates and speak for her because she simply didn’t have the proper speech to do so.

Autism doesn’t just affect the person born with it or the parents, it affects the entire family. In most cases, the stories I hear are from parents and the everyday challenges they experience. Since I wasn’t the parent, I felt like I couldn’t talk about my own struggles. I suppressed a lot of emotions about how it was also affecting me because I didn’t want to feel like a burden to our mom. She had more than enough on her plate; her own personal issues, being now a single parent of a teenage girl and a special needs toddler in a foreign country. Where we come from, us daughters, we have this sense of responsibility to become our mother’s mothers. We take on their burdens because they simply lack the emotional intelligence to consciously maneuver the hardships of life. But honestly I didn’t want to see our mom suffer any more than she already was. So at just 18 years old, I became like a second parent to my sister.

For a while I felt very proud of being “my sister’s second mom”- that’s what I would call myself. However, I then began to develop anger and resentment because I couldn’t hang out with my friends on certain weekends. Having to babysit my sister while our mom worked made me feel frustrated because I couldn’t say no most times. At the same time the feeling of guilt would eat me alive for refusing to babysit as I got older because of my own personal life. In most hispanic cultures, the older siblings are, in a way, obligated to help raise the younger siblings. Our mother did it with hers, so I was expected to do the same. Years went by and the emotion I kept experiencing continued to grow. I couldn’t wait to leave my mom’s apartment to live my own life and feel free of having to carry burdens that weren’t even mine. But the thought of leaving Ari behind would make me feel very sad. 

Arianna and I share a special bond that no one could understand. I always felt very protective over her. Constantly fearing someone taking advantage of her or even being a victim of bullying for simply behaving weirdly at times. That’s why at an early age I taught her about protecting her private parts and if someone was being mean or a bully towards her in school that she could have the confidence to tell me. I’m always checking to see how her day in school went and when she visits friends and family with our mom to ensure her safety. At the same time, I deeply regret now how I would lose my temper and yell at her to the point of even spanking her for simply not “following my instructions” during my younger years. I owned up to my poor behavior and apologized to her for making her cry in the past. And since then, I made a promise to never hurt her physically, mentally or emotionally. That I will always be the Elsa to her Anna – that’s what we call each other because it represents our special bond and it’s our favorite Disney movie.  

I know one day I will fully take on the responsibility of looking after my sister when our mom leaves this Earth. Honestly, the thought of it scares me to death. But, I’ve come to make peace with it and when that moment comes I will take on the challenge. Luckily, I have an amazing and very supportive partner by my side that understands and is fully aware of it, even though he didn’t ask to be part of it when we decided to share this life together. I always ask God to make sure she takes Arianna after our mom because the thought of her being alone on this planet without one of us completely breaks me. I have developed a high level of resilience throughout all my life experiences and I believe I am more than equipped to take on extreme levels of pain to ensure others don’t suffer. Call me a masochist – I guess that’s one of my many super powers.