Forever young: From childhood to adulthood with my autistic brother
By Annalisa Rowles
Master's student, Online MPH in Population and Health Sciences
This article was originally developed for PH510: Communication Fundamentals, in the Population Health Studies online MPH program. Learn more about the storytelling series from class instructor, William D. Lopez.
Author's note: In my public health story, I will write about my brother, who is autistic. When talking about autism I use identity-affirming language, as recent research has shown that most autistic adults prefer identity-affirming language (“autistic person”) to person-first language (“person with autism”). When referring to people with disabilities, I will use a combination of person-first and identity-first language to reflect that disabled people hold a variety of perspectives on this matter.
I’ve never been able to pinpoint a precise moment in time when I realized my brother and I would experience the world very differently. As the younger sibling, I can remember the anticipation of waiting for Zachary to come home from school and wondering when I’d finally be old enough to ride the school bus just like him. On the weekends, we spent our time together playing wiffle ball in the backyard, swimming in our aunt’s pool, and having campfires at our family cabin. Despite the presence of a communication barrier, we still had plenty of ways to connect and have fun together.
When I began school, I started to notice that my brother was different from other kids. While other kids his age typically sat toward the back of the school bus, Zach — who is seven years my senior — always sat in the front, always in the same seat, and always alone. He never brought homework home with him, like I did. In addition to our respective lunchboxes, my mom would also send him to school with a pair of over-ear headphones in case of a fire drill or a school assembly. I can recall my mom at some point around this time telling me that “Zachary has autism,” but not really understanding what that meant.
As we both got older, our differences became more apparent. Because Zachary’s autistic neurotype affected his language development, we weren’t always able to communicate — although, with time and practice, anyone who gets to know Zach can tell when he’s putting in his two cents or cracking a joke. I often felt sad, confused, or rejected when he didn’t seem interested in playing with me, or if a miscommunication caused an outburst of anger or frustration. Soon, I began to grow out of things that Zachary seemingly didn’t — like believing in Santa and watching cartoons. With the excitement that came with each milestone I passed, I experienced a pang of guilt for each one Zach never got to experience, like getting my driver’s license, being accepted to college, or going to prom. As I was planning out what the next steps in my life would be, I found myself wondering — what’s next for Zach?
My brother’s high school graduation is a day I can vividly remember, partially because of how stiflingly hot and humid our high school gym was that day, but mostly because I remember that both of my parents radiated joy and pride. Because when Zachary was born, the Individuals with Disabilities Education Act (IDEA) had only recently been amended to include autistic children when he became of age for public school. As a result, he was the first person with a developmental disability to enroll in public school in our hometown, paving the way for many other students with disabilities who have followed.
When he crossed the stage, the excitement in the room was palpable. My mom had tears in her eyes the entire time, especially when the class song played over the intercom — the class of 2007 had selected Rod Stewart’s version of “Forever Young,” which seemed incredibly fitting for my kid-at-heart big brother.
However, while high school graduation is often the point in time where teens transition into “the real world,” with the joy and accomplishment of my brother’s achievement came some uncertainty. In school, he was able to interact with his peers and go out in the community during class periods to work at the local gas station and at a local restaurant with help from a personal aide. After graduation, he would be losing access to many of the supports that allowed him to be connected to the community.
Following graduation, my parents decided to enroll Zach in a post-secondary education program through our county’s intermediate school district (ISD), which allowed him to continue learning and being active in the community until he turned 26. At that point, the same question from before returned once again — what’s next?
In the ten years that have passed since then, my brother has utilized the self-determination program through his local community mental health (CMH) agency for support. Self-determination is the concept that people with disabilities have the right to choose what, if any, services they want to receive and participate in, and ultimately allows them to exercise their right to make choices about their own lives. At first, his participation in this program went well — my parents were able to help Zach hire a direct support professional (DSP) who could transport and accompany him to work, local parks, the YMCA, and the library, among other places. The professionals who worked with Zach were wonderful, caring people who often developed close relationships with him. They also served as a critical connection that provided the support Zach needed to have greater autonomy and more fully participate in our community.
However, finding and keeping people on board to assist Zach in this way has proven to be a persistent challenge. Since the COVID-19 pandemic, my parents have been unsuccessful in finding a DSP to work with my brother due to staffing shortages, low wages, and the minimal to nonexistent benefits offered for these positions. Most DSPs are not paid a livable wage — the average hourly wage in Michigan was just a shade over $12 an hour as of 2020. DSP positions also have high turnover and vacancy rates. Despite the importance and demand for their work, many DSPs must rely on public assistance themselves to feed their families and obtain health insurance. The lack of funding, training opportunities, and career advancement opportunities for DSPs contributes to the continued shortage of these critically important professionals.
Where my brother and parents live, individuals must be Medicaid recipients in order to qualify for the self-determination program. While DSPs are paid out of a program budget that is managed by CMH, my parents were the ones responsible for finding and hiring someone to work with Zach in this role. The self-determination program also dictates how many hours are allotted to recipients, which imposed limits on Zach’s community engagement while also making the pay for the DSP role less attractive.
Ultimately, shortages of DSPs prohibit many people with disabilities from being fully integrated in their communities, finding and sustaining employment, and living their lives the way they want to.
For this to change, both a significant cultural shift in how our society treats and values disabled people and changes to public policy are needed. For our family, destigmatizing autism and developing more robust and accessible living supports for disabled adults are just a few examples of the changes that are needed in order for Zach to live life on his own terms.
While some progress has been made through policy measures such as the Americans with Disabilities Act and improvements in our understanding and ability to diagnose autism, many autistic and disabled adults still struggle to be truly integrated and accepted within their communities.
I am hopeful that someday we will have created a world in which people with disabilities and their families don’t have to constantly question, “what’s next?”
Lead image: The author and her brother in front of the fireplace in their family home. Photo taken by the author's mother.
About the author
Annalisa Rowles is a master's student in the online MPH program in Population and Health Sciences at the University of Michigan School of Public Health. She is a registered dietitian,
and aspires to continue her work in public health to make the world a healthier place
for all people.
