When I was nine years old, I became an advocate. We were out in public and a woman chastised my mom for being unable to control my younger brother, Joey. My blood started to boil and I was outraged by this woman’s lack of empathy. However, my mom handled the situation with poise and grace, focusing less on the reprimand and more on helping my brother calm down. As the woman walked away, I thought to myself, “If only she knew Joey, and knew about autism, maybe she would have treated him differently.”
But it’s often difficult to know when someone is on the spectrum, which is why I was compelled to create something tangible to help spread awareness. And so I designed a pin that said: “I’m not misbehaving, I have autism. Please be understanding.” This pin became a symbol of empowerment for my brother, and eventually expanded out to the greater autism community. We partnered with Autism Speaks to sell this pin on their platform and went on to raise tens of thousands of dollars for autism research. This became a defining moment in my life and one that encouraged me to pursue a career in education and advocacy for those with special needs.
I was two years old when my brother Joey was born. I could not have been happier to assume the role of older brother. Of course, for so many kids, the sibling bond is complex. But for siblings of individuals with autism, like myself, that bond can be even more complex, changing and evolving over time. In the book Autism Spectrum Disorders: Identification, Education and Treatment, Dianne Berkell Zager explains, “Living closely and intensively with a sibling with a disability can be both rewarding and stressful” (2004). To me, that sentence defines this sibling connection perfectly.
My brother is non-verbal and was formally diagnosed with Autism Spectrum Disorder (ASD) at the age of twenty-two months old. As you can imagine, my four-year-old brain didn’t quite understand what that meant. I remember my parents sitting me down and explaining that while our dynamic would be different, we were still a strong family unit. And they were certainly right. It was not always easy, and I often compared my relationship with Joey to those of my friends and their siblings. But I learned to accept Joey for exactly who he was. And we developed our own type of amazing special bond. Whether it’s cheering on the Yankees together or holding hands during the Radio City Christmas Spectacular, Joey and I have developed a close relationship built around trust and unconditional love.
But perhaps one of my greatest joys as a brother has been watching Joey progress against all odds. He was the type of baby who escaped from his crib and couldn’t stay in one place for very long. When he started formal schooling and speech therapy, we began to see small improvements in his communication skills and behavior.
As the number of children diagnosed with ASD increases and as they grow up, there is a greater focus on adult issues. And while there has been a decent amount of research into the effects of ASD on siblings during childhood, there has not been as much focus on what happens when they become teens and adults (Foden, 2008). This research would have a huge impact on the lives of autism families and could hopefully inspire more siblings to get more involved in advocacy efforts at a young age.
Below are just a few examples of the innumerable ways that having a brother with autism has impacted my life, from my career choices to the ways in which I interact with the community on an everyday basis.
Inspiring a Career
I knew that the ASD community and this type of environment would always be a part of my life, I just didn’t know how. When I was in college, I changed my major a few times, and at one point I thought I would become a special education teacher. I then found marketing and communications, fell in love with it and ended up finding a perfect blend of these two passions at The Arc Westchester. I was able to marry my love of marketing and my deep connection with this special needs community.
Throughout the COVID-19 pandemic, I faced an interesting situation in my career. I was working from home with my brother; who’s routine was interrupted by sheltering in place. At the same time, I was helping my organization come up with new ways to innovate and expand their services virtually.
Time and time again, we have seen that special services can sometimes cliff when individuals graduate from high school, but I define COVID-19 as a trap door for a lot of families. It was so sudden and abrupt. This pandemic showed us why organizations like ours are so vital to this community. Even when they couldn’t be there in person, or didn’t have all the answers, they were still there.
Impacting the World Around You
Studies have shown that siblings of people with autism report having less conflict in the sibling relationship, family resilience, and self-perceived competence. They have also been shown to have a more positive opinion of the sibling relationship (Green, 2013).
And I will attest that you feel a heightened sense of responsibility as a sibling of an individual with ASD. My first-ever detention in school happened because I was reluctant to leave class during a fire drill because I wanted to find my brother and make sure he got out okay. Being Joey’s brother has also made me a very compassionate and understanding person. I always listen to others and try to understand where they’re coming from, because I know that everyone has a backstory.
Like most siblings of individuals with ASD, I have often wondered what life would be like if my brother didn’t have autism. But I’ve come to accept that this is who he is and it’s what makes him so special. We can’t change our siblings, but if we can educate the world around them, we might be able to have a profound impact on how the world views their differences and understands autism.
A Lifetime of Advocacy
From the moment my brother was first diagnosed, my parents became autism advocates. They instilled this dedication in me and encouraged me to lead a life of education and compassion. I’ll never forget the first time my mom stood her ground when my brother started making a lot of noise in public. She didn’t apologize for his actions; she stayed calm and focused in helping him relax. And it was through her selfless actions that I was inspired to create the autism empowerment pin. To this day, I’m still blown away by the support we’ve received from these efforts, and I proudly carry out its ideals and mission every day. The pin itself is a constant reminder of how far we’ve come in society toward raising awareness around autism, its impacts on families across the globe, and the many ways that we can support individuals with autism achieve personal goals and independence. But we still have so far to go.
The Arc Westchester has been supporting families and individuals in Westchester County for over 75 years, and my work here has really just begun.
Nicholas Lombardi is the Social Media and Marketing Manager of The Arc Westchester, the largest agency in Westchester County, NY, supporting individuals with developmental disabilities, including those on the autism spectrum, and their families. He has a Bachelor of Arts degree in Communications from Manhattanville College. For more information, visit ArcWestchester.org.
Foden, Teresa J. Adults with ASDs: My Brother’s (Sister’s) Keeper. The Interactive Autism Network. 2008
Green, Laura. The Well-Being of Siblings of Individuals with Autism. ISNR Neurology. 2013
Zager, D.B. Autism Spectrum Disorders: Identification, Education and Treatment. 2004