OARacle Newsletter

Being an older brother to someone with autism spectrum disorder (ASD) is a journey filled with unique challenges and profound rewards. To provide insight into our family and the perspective from which I write, I am the older brother of James, the younger brother of Jacob, and the son of Sherly and Tom. The middle child, to be exact. James was diagnosed with autism at a very young age. As one can imagine, the diagnosis brought a mix of confusion, fear, and ultimately, a deep sense of purpose and understanding into our family dynamics. Jacob and I realized when we were young that a day will come when it is up to us to ensure James is safe, happy, and fully taken care of at all times.

ASD is a wide spectrum, meaning that no two experiences are the same, and we had to learn what worked best for James through trial and error. At one point, we even moved to India for one year for a specialized program. Throughout our lives, my family and I have been leveraging resources, programs, and initiatives to provide James with a sound quality of life.

Things were not always easy early in my life. I often found myself caught between wanting to be a typical teenager and needing to be more mature and understanding than my peers. Social interactions were particularly challenging. Taking James to public places could be unpredictable, and I became acutely aware of the stares and judgments from others when he would have a meltdown in public. It was difficult to explain to friends why I couldn’t always hang out after school or why my house seemed different from theirs.

One of the most difficult aspects of having a sibling with ASD is the unpredictability. Routine changes or unexpected events could trigger anxiety and meltdowns for James. Family vacations, holidays, and even simple trips to the grocery store required meticulous planning and often ended in stress and exhaustion. It was challenging to balance my own needs and desires with my brother’s needs, and there were times when resentment and frustration bubbled to the surface.

Despite these challenges, growing up with James taught me patience and empathy I might not have learned otherwise. I had to learn to communicate with him in ways that made sense to him, often using visual aids or finding creative methods to explain things. This taught me the importance of seeing the world from someone else’s perspective and adapting to meet their needs.

James has a unique way of seeing the world that is both refreshing and inspiring. His ability to focus intensely on his passions is nothing short of amazing. Watching him achieve milestones, no matter how small, filled me with a sense of accomplishment and pride that I couldn’t find anywhere else.

One of the best parts of being James’s sibling is the deep bond we share. Our relationship has taught me the meaning of unconditional love and acceptance. James has an incredible memory and often surprises us with his recall of events and details that we have long forgotten. His honesty and straightforwardness are refreshing, and he makes me see the world differently.

As James grew older, we found a rhythm that worked for our family. We learned to anticipate his needs better and found support through various autism organizations and support groups. These resources provided not only practical advice but also a sense of community and understanding that we desperately needed.

Today, James and I share a relationship built on mutual respect, understanding, and love. He continues to amaze me with his growth and resilience. We have learned to celebrate his unique strengths and support him in areas where he faces challenges. Our bond is stronger than ever, and I am grateful for the perspective and depth he has brought into my life.

James has shown me the beauty of seeing the world through a different lens and has inspired me to pursue a path of advocacy and support for others facing similar challenges. Our relationship is a testament to the power of love, resilience, and the unbreakable bonds of family. Despite the difficulties, I would not change our journey for anything. He is my motivator to always strive for success and be the best person I can be. He has shaped me into the person I am today and given me a sense of purpose and understanding that I will carry with me for the rest of my life.

Joseph Mangalasseril Thomas serves on OAR’s Board of Directors. He has also been a peer coach for Special Olympics, and has taken other roles in related opportunities in the Chicago area. His leadership positions stretch across several organizations that include titles such as co-founder, chairman of the board, two presidencies, and four director positions. He is currently the manager of global sourcing at Medline Industries and the president of JT Mang. He is a graduate of Miami University, Oxford, Ohio.