Our Autism Journey
As the oldest sister of 2 brothers with disabilities, I took on a protector role from a very young age. I was four-years old when Alex was born. The words “Down syndrome” meant nothing to me. All I knew was that I was a big sister, and even at the age of 4, I felt an immediate strong hold connection to this tiny human who I would forever and ever embrace and protect.
Twenty months later, Charlie was born. Charlie was three years old when he received an autism diagnosis. By then, I had learned what Down syndrome was: how it would impact Alex and his development, but also how it made him so beautiful and joyful. Autism became the next diagnosis to understand. Since then I have learned so much about the triumphs and challenges of people with autism. The more I’ve discovered, the more apparent it has become that the rest of the world has a lot to learn too.
I was told as a child that Charlie would have a difficult time connecting with me, talking with me, and playing with me. But with time I felt lucky, realizing that Charlie and I did connect. Actually, we connected very easily. He was a gestalt language processor, learning language by memorizing phrases and chunks of words from a show or maybe a song. As a Theater Kid, I loved to sing, so when Charlie echoed the Blue’s Clues theme song, I was happy to join in. I remember he would eagerly watch my mouth moving, singing along and laughing. He would hold my lips open then close them in sync with the words. He was so intuitive to music and sound, and I treasured his gift. He loved bear hugs and laughter and french fries, and he loved my brother Alex. The two of them would play together for so long they would eventually fall asleep on the floor, and I would smile as I felt relief in how easy it was for them to connect. They understood each other. I saw a world of autism within my home that, unfortunately, the world could not see.
In the early 2000s more young children were being diagnosed with autism than ever before, but there were less answers. “Curing” autism was huge. Words like detox and chelation circulated. ABA (applied behavioral analysis) was new – expensive – and booming. Parents and experts alike fixated on the question, “how can we make these children fit in?” At a young age, the idea of “curing” my brother kind of blew my mind.
Charlie and I after completing a high ropes course together.
Of course, there were challenges: it wasn’t all singing, dancing, and playing. There were times that would cause intense stress: the classic scene in the grocery store where Charlie would become increasingly overstimulated and upset, crying the biggest tears I have ever seen. To this day I can still see the stares from the shoppers around us, pushing their carts. Some looked at my mom with sympathy, but no one ever offered to help. Most stares were loaded with judgement. While I saw the challenges, the meltdowns, and the stares, I knew that “curing” my brother was never the answer. What would happen to all the beauty within him? His ability to listen to a song once and repeat it in perfect harmony? His ability to fly through computer games, effortlessly advancing through levels. Would he still laugh with me and hug me the same way? Would he still spin and swing and practice my gymnastic moves with me? Would our deep understanding of one another change or even end?
Two decades have now passed. And while the world’s quest for a “cure” was futile, my family instead invested in advocacy and opportunity for Charlie. He started out with the first-line ABA therapy, but it was not a good fit. (I’ll save my thoughts on ABA for another day.) So my parents turned to other therapies and resources, including weekly speech and OT. My parents fought hard for integrated classroom settings, 1:1 aides, social opportunities, and eventually vocational training for him as transitioned from high school. Their efforts were met with much resistance. On several occasions, the administration pushed back, “well, we’ve just never done it that way before,” “let’s wait and see how he does,” or even “I just don’t think Charlie will be able to do that.”
But Charlie fought back too. He often proved the system wrong, showing that he in fact was able to do that. He is living evidence that Autistics do seek meaningful connections, relationships, and social interactions, and he could do anything he wanted to. In fifth grade, Charlie initiated his entrance into the school talent show, where he got up and sang The Start of Something New from High School Musical. I was in high school at the time, and I will never forget how he looked standing up at the microphone, so brave, earnest, and sweet. The roar of applause from his peers brought me to tears. I have never seen him smile so big. In middle school he joined the track and cross country teams, where he developed strong bonds with his teammates. Through running, he found a way to move his body that met his sensory needs and offered a sense of calmness. In his senior year of high school, Charlie entered a graphic design program, where he mastered photoshop and video creation. It made him proud: he did that.
The transition to adulthood came with challenges. After graduation, there is a sudden loss of routine and resources. Perhaps, this was the hardest stage. Charlie, living in my parent’s basement, spent most of his days on the computer. His anxiety was higher than ever. He had aspirations of getting a job and living on his own. And honestly, that did make my parents and me nervous. We started by trying to find the right job. “This is step 1,” my mom told him, “then we can talk about living on your own.” He eventually thrived in his job-training, delivering mail in a major hospital system. He was clearly the best at the job: very organized, scheduled, and routine-driven. Still, the program was not so forgiving of some of Charlie’s “behaviors,” as they called them. If something did not go according to plan, Charlie would get very upset and overwhelmed, often resulting in a melt down of sorts. But instead of adapting the environment or seeking alternative ways to help Charlie thrive, Charlie was deemed “unemployable.”
Of course, we refused to accept this, and so did Charlie. He went on to interview for several jobs. Interviewing was tough, and Charlie had a difficult time finding employment. There was a lot of hesitation from employers founded in the idea that Charlie would not be their typical employee. Charlie became discouraged and unfulfilled. At that time I was in occupational therapy school, working towards my master’s degree. I was learning about the role of OT and how our values are rooted in helping others become more independent in daily life. I wondered, why did Charlie stop receiving OT at the age of 11 years? It seemed that the transition to adulthood should be the perfect time to intervene as an OT: a chance to help him achieve his goals and find meaning in day-to-day life. I went to OT school because I knew I wanted to work with people with disabilities like my brothers, but not until this point did I find my true why. My purpose became the invention of something novel in the OT world – a way to help people with disabilities transition more successfully into young adulthood. This new approach would focus on teaching independent skills that empower the lives they want and deserve.
Charlie and I at the 90s party he hosted! Charlie dressed up like Chris Farley from SNL. He loves all things comedy and all things nostalgia!
Thanks to my parents’ persistence and their strong network, Charlie found a job. A position opened at our local grocery store for Charlie to work weekends. He immediately took the job and still loves his Saturdays and Sundays at the register. By now Charlie was adamant about living on his own. Charlie did not forget step 2 of my mom’s promise, and he is not one to back down. After tackling some goal-setting and the expected fears, Charlie accomplished this too. He still lives in his own apartment and has for over 5 years now. He even got a new job, Monday-Friday at a large insurance company. But Charlie did not want to give up his job at the grocery store, so he kept that one too. Yes, that does mean he works 7 days a week, and he loves it that way. Work offers Charlie a sense of purpose, and often serves as his primary source of social interaction.
I am so lucky to be Charlie’s sister and to be part of his autism journey. There is so much more that I could write about what I have learned from him, but I will try to summarize: for a long time the world told us that Charlie had “too many behaviors” and “too many challenges.” They told us he “wasn’t employable” or “would never live on his own.” If we had believed that, or all the things we thought to be true about Autism, he would not be where he is today.
As I continued on within my own career as an OT, I often found it difficult to align my passion for this community within my work in a way that feels meaningful. As Charlie found a way to make his jobs and his life work for him, I knew I needed to do the same.
I joined together with my dear friend, Hanna, who shared the belief that we could create something together. Hanna, who sat 3 seats away from me every day in graduate school, shares my passion and love for the autism community. We created Infinity OT, so that we can empower autistic adults to advocate for themselves and discover ways to make the world work for them. We also recognize the roles and needs of parents, and help them understand their child’s diagnosis in our positive viewpoint.
Though our field has made progress since my brother’s diagnosis, there is still much work to be done. Infinity OT is a platform devoted to lifelong learning and advocacy, forever striving to change the societal view of autism. We believe in a world that is an empowering and safe place for autistics to live meaningful lives. Charlie’s autism journey is ongoing, and my life’s purpose is to not only help him, but also to ensure that other autistics know there is someone in their corner, too.
Charlie, Alex and me.
