Written by: Tiara Jade Chutkhan
For about a year now I’ve contemplated writing this piece. I long debated how to frame it, what I wanted to say, and how I should say it. This experience is dear to my heart and something I feel vulnerable talking about. I felt that until I found the right words to express myself I would have to put off writing. April is Autism Awareness Month and guess what? I’m the proud older sister of an autistic younger brother.
I’ve noticed that there isn’t much disability representation in the Indo-Caribbean community. I’m certainly not saying it doesn’t exist, or that there aren’t members of the community who speak out and advocate. I know there are members of the community with disabilities, but I haven’t personally found many. I’ve looked for resources and representation because the same way my community has helped me to grow, I wish that my brother can have that as well. Our story is one that only those closest to me know, but my hopes are that in sharing my brother and I’s experience, we can help to create some conversation and representation around the topic.
My brother Jalen was around four years old when he was diagnosed with autism. At the time, I was fifteen. This was a completely new world for myself and for my parents, not having any experience with family or friends with disabilities. I knew of autism, but I didn’t really know what it meant. If you’re unfamiliar, autism or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication (via Autism Speaks). They call it a spectrum because the characteristics of someone with autism can range from mild to severe. Autism looks different for everyone.
Jalen didn’t speak much. He made sounds and said a handful of words, but his vocabulary wasn’t as developed as it should have been around the time. I remember hearing others say that boys speech development was usually slower than girls, so it didn’t seem like something to worry about. Another sign was that he liked to line things up, his toys and figurines. He had a ton of energy and could run around our apartment all day, rarely getting tired. When he started kindergarten, his teachers picked up on these traits quickly. I don’t remember exactly how the process of his diagnosis happened as I was still young at the time, but after we received it I remember feeling sad.
This sad feeling came from remembering just how cruel the world can be at times. There were always those kids at school who would taunt and bully those with special needs. I had seen it happen plenty of times at school and it always left me with a nauseous feeling in my stomach. I felt horrible because although I knew it was wrong, and seeing those things made me upset, I never stepped in or said anything. I was hit with the realization that my little brother could face those exact situations.
I also wondered about what our relationship would look like. Growing up with Disney Channel sitcoms, I had a pretty specific image in my mind of big sister/little brother relationships. Aside from those, I had my own idea of what I wanted our relationship to look like; playing video games together, reading books, having conversations about life and each other’s day, taking him everywhere my parents would allow me. Our relationship today actually consists of al;=l of these things, it just doesn’t look exactly the way I once pictured.
Jalen and I are 11 years apart. For me, becoming a big sister was both exciting and strange. Having that large age gap meant that I was old enough to watch my little brother grow and remember each step along the way. I sometimes helped to put him to bed, feed him, and rock him when he was fussy. I loved to talk to him and show him my favourite things, secretly hoping he would grow to love them too. But while I was trying to teach him, he too was teaching me, although I didn’t recognize it at the time. This only amplified after we received his diagnosis.
Jalen’s autism opened my mind over the years. As cliche as it may sound, it made me think differently. The way I was taught things like the abc’s, counting, reading, etc., didn't necessarily work for him. We had to approach things differently and pay closer attention to what mediums helped him remember and retain information. One of the biggest ones was music. Jalen loves music and singing. Although the words would be jumbled, he would happily belt out a tune and over time, through repetition, he would memorize it from start to finish. Music, along with movies and shows, helped him build his vocabulary over time. Through repetition, listening and watching, he would start to integrate what he heard into daily life.
As his sister, patience has been my biggest lesson. The reality was that Jalen didn’t always understand how to answer questions like “how was your day?” or “what did you do today?” These were things that we worked on at home and he worked on at school. As I mentioned before, repetition helped him learn, but it was also something he often did when spoken to. I would ask him a question, or tell him about something, and his response would be to repeat what I said. It was frustrating at times admittedly because all I wanted was to hear my brother respond to me and talk to me. To have a real back and forth. I had to be patient and work with him. At his own pace, he would be able to achieve these things.
Another reality is that autism will surprise you. When Jalen was about 10, I listened to him read an entire book on his own, word for word for the first time. He and I were walking in Wal Mart’s book section when he came across The Very Hungry Caterpillar by Eric Carle, a classic. He picked up the book and began to read. It made me teary, right there in the store. I didn’t stop him, I didn’t want to. Hearing his voice as he read that book was a huge achievement. He read so clearly and confidently. It was honestly a moment I will never forget. In the years to come we have pushed him to read more, sound out words, and work his way up to material that’s closer to his age group. I’m incredibly proud of his progress, and am often surprised when he’s able to read larger words without hesitation.
My brother Jalen is 14 now and absolutely killing it in his daily life. In many ways he is no different than any other boy his age. He loves video games and can usually be found glued to the basement recliner with a PS5 controller in his hands. He’s a wiz with his tablet, and most technology, easily picking up new things in a few hours. He’s been taking formal singing lessons for just over a year and has passed five levels already, earning him two trophies and three performances, and the title of “rockstar.” He started learning sign language last year and has picked it up quickly, often teaching me and our parents how to say things. He’s a chatterbox and sometimes I can’t keep up!
In sharing this, as I said in the beginning of this piece, I hope to create more conversation and transparency around disability in the Indo-Caribbean community. There are many stigmas around disability, and for many of us, unless we’ve personally experienced disability ourselves or in our family, we don’t know much about it. I had no knowledge of autism prior to my brother’s diagnosis. Though it’s been 10 years, myself and my family are always learning.
My brother is my best friend and the sweetest person I know. He gives the best hugs, is smart, funny (his sense of humour is honestly the best), gentle, loving and so much more.
Without a doubt, Jalen is my rockstar.
