Your children are just as worried about you as you are about them…
My younger brother, Preston, was diagnosed with autism on December 29th, 2002. My mother would often retell the story in great detail, saying, “I’ll never forget the neurologist slamming us in the face with the diagnosis while you and Austin were standing there. I ran out of the doctor’s office, crying and screaming as though my child had been kidnapped.”
It was only 14 years ago, yet so much less was understood when faced with the word “autism.” We hadn’t a clue what this diagnosis meant for our family, but my parents took action; they wanted to make sure to thwart this thief they called “autism.” My mom went back to school to learn about special education law, my dad traveled the country searching for remedies and answers, and now both of them have careers centered around advocating for and assisting individuals with special needs.
Preston is the sunshine of our lives, but we all continue to make sacrifices to ensure his safety and progress. I was five years old when my brother was properly diagnosed, so I don’t remember my life without autism, apraxia, and later, seizures. At 10 years old, I was sometimes charged with the task of keeping my jumping, spinning, climbing, never-still brother safe. Sometimes, that meant missing play dates, birthday parties, and sleepovers to do my part, so I could understand my parents’ fears. When I helped to give him a shower, made him lunch, or learned his complex medication schedule, it meant I was taking time away from homework, friends, and what little downtime I had left. In retrospect, I would do it all again (and more).
Now, inspired by Preston and our journey, I’m in college studying neuroscience and doing autism research. I have an older brother who is following his passion as a photographer. My family has never felt resentment towards Preston. Though life wasn’t always easy, he never stopped being my favorite little brother, and I attribute a lot of that to the way our parents raised us. There are no rulebooks to parenting, certainly not for special children. My parents had to learn through experiencing Preston’s challenges and taught me how to do the same.
They were honest.
My mom and dad kept my older brother and me in the loop from a pretty young age, and they didn’t sugarcoat or beat around the bush. Though kids can’t truly comprehend what it means to struggle financially, we could understand that a new toy just wasn’t in the cards. It’s hard to explain educational law to children, but we could understand that Preston needed special attention in school that wasn’t always easy to get. Whatever was going on in the house, mom and dad always kept us updated on why things had to be the way they were, and we put our trust in them because they put theirs in us.
My parents would always tell us when they were frustrated or in a bad mood. This type of honesty was so important—it allowed my older brother and me to express our frustrations and gave us power over those feelings. Growing up with a sibling with autism isn’t always easy, but the honesty of our parents set the stage for us to process our emotions and to share them in a healthy way.
They were involved.
As soon as Preston was diagnosed, my parents got the whole family on board with fundraising, walking for autism, and raising awareness. We held an annual garage sale, and everybody had a job to do—including five-year-old me, smiling proudly at my little lemonade stand. They showed us how to believe in a cause and stand by our friends and family as we sought to make a difference. It builds a lot of character to be a part of something bigger than yourself at such a young age, and it taught me early on how to be an active citizen. Both of my parents gave speeches, raised money, did their research, and set an example for how to be a part of a community.
They taught us how to be advocates.
By reaching out to families facing the same challenges in raising a child (or children) with autism, they became stronger, wiser, and more capable to help my brother. I recall many nights when my dad would kiss me on the forehead and tuck me in, only to go back to the phone to help another parent wend their way through autism. My mother wore a headset so she could call clinicians, schools, and autism organizations while she cleaned or cooked. Nothing would break them in this fight.
I learned to advocate for the issues that mattered most, and that heartbreak cannot be the yardstick with which to measure those issues. For example, when Preston was in kindergarten, my parents were invited to open school night. As they glanced around the classroom, they enjoyed impressive finger paintings, self-portraits, and misshapen clay statues. They quickly noticed that not one piece of artwork was Preston’s. However, when they asked the teacher where his artwork was displayed, she lowered her eyes and said, “Preston’s artwork wasn’t like the others, and we didn’t want to upset the other parents.” That night, I could hear my parents comforting each other through tears. The next day, they went to the school board and made sure that never happened to another child, any child, ever again.
Preston’s autism is severe. He cannot speak or tie his own shoes, but he is also extremely sweet and gentle. I watched as my parents fought for his education and his dignity. Bullying was always a concern, but I hadn’t realized it came from both the school and his peers. My parents didn’t just teach us to be active in the global community—they made it personal.
They taught us not to just stand up for ourselves, but to be the voice for those who couldn’t speak for themselves.
One story my parents shared with pride was about a call they received when I was in third grade; the school was concerned because I apparently wandered the playground to make sure the other children weren’t being bullied and that nobody was playing alone.
My parents not only advocated for Preston—they do it for a living. My family reminds me every day that it’s vital to stand together, and that isolation only feeds discrimination.
They taught us what autism means, but also what it does NOT mean.
Autism is a disorder that makes it hard for Preston to make friends, but it does not mean he doesn’t want friends. It makes it hard for him to talk to us, but it doesn’t mean he can’t hear us. It makes it hard for him to express his feelings, but it doesn’t mean he can’t be hurt the same way we can. These things are easy to understand when you put them in these terms. Kids might make assumptions based on how a child with autism will act. I had a friend come over and say that Preston reminded her of a dog because he liked to sit under the table. Rather than get angry with her for insulting him, I politely turned to her and explained that he has sensory processing issues, and maybe the floor under the table was just a more comfortable place for him to sit, like when we sit in comfortable bean bag chairs. That compassion, rather than frustration, was demonstrated to me time and time again by my parents who, when I didn’t understand what Preston was doing, would help me understand.
My older brother is a photographer, and he always says that Preston is his favorite subject because he is never anything other than himself. He says that Preston has a purity and honesty that comes through, even in photographs.
Being a sibling to Preston is a privilege and a blessing. He is an inspiration to my entire family. He lights up every room with his enormous smile, and I wouldn’t be the responsible, empathetic, and joyful human being I am today without him. As a family, we conquer any challenges that come our way, because we have been raised as strong and powerful individuals. I will always pull from what my parents and Preston have taught me.
Every spectrum family is on its own journey and will endure its own unique challenges. But my parents were perfect examples of strength and love, offering an environment of unity and learning. Frequently I hear people say, “Preston is so lucky to have you as a family,” and I simply respond with, “We are lucky to have him.”
“Autism, like a rainbow, has a bright side and a dark side, and even though it can mean rough weather, it can be beautiful,” — Stuart Duncan.
Payton DePalma is a neuroscience and film double major at Vanderbilt University in Nashville, TN. She is from Westchester, NY and has a penchant for outdoor activities, science, and puppies.
This article was featured in Issue 55 – Celebrating with the People We Love