April 29, 2021, By Molly Ortiz, Director of Marketing
Today, Autism Spectrum Disorder (ASD) is said to affect 1 in 54 children in according to the Center for Disease Control’s Autism and Developmental Disabilities Monitoring (ADDM) Network, and is defined as “A developmental disability that can cause significant social, communication, and behavioral challenges.” People with ASD may communicate, interact, behave, and learn in ways that are divergent from most other people. You can’t identify someone with autism by how they look. In general, ASD doesn’t affect physical appearance.
In addition to growing research and studies on Autism Spectrum Disorder, a movement to shift from “Autism Awareness Month” to “Autism Acceptance Month” has been gaining momentum. This change is explained by the President and CEO of the Autism Society of America, Christopher Banks:
“While we will always work to spread awareness, words matter…As many individuals and families affected by autism know, acceptance is often one of the biggest barriers to finding and developing a strong support system.”
A strong support system is essential for children, in particular, to be afforded the opportunity to learn and grow. One could argue that a society can be measured by how it treats its most vulnerable populations, and we as a society can do much better to support and accept what makes us different—including, but not limited to, supporting those on the autism spectrum.
The following highlights my family’s story and our journey towards acceptance.
My Family’s Story
In 1980, when my brother was born, there was little known about Autism Spectrum Disorder (ASD) and it wasn’t a common diagnosis. According to data from the Autism Science Foundation, the reported cases of autism were 4 out of every 10,000. The science and diagnosis at the time was new and emerging. A lot has changed since then, but there is much to still be uncovered.
By 1982, my parents could tell that my brother, JP, wasn’t developing at the normal rate. Up until this point he had shown all the “normal” signs of development, but then his language started to regress, and he wasn’t making eye contact. At one point they were referred by his pediatrician for additional testing which brought a month-long evaluation and then finally, a diagnosis—Autism Spectrum Disorder (ASD). Later on, my parents would also discover that JP had developed epilepsy that would require lifelong care and that his epilepsy would prevent him from developing cognitively. These diagnoses meant that my parents had answers to explain his symptoms, but it also meant that he would have access to services and that JP would qualify for special education related services and additional support throughout his life. The diagnosis of ASD also carried the weight of a stigma for being different that we would learn to navigate as a family and still do to this day.
Growing up with a brother on the spectrum meant that some things were different for my family, but many things were the same for a “typical” family of five. Having two older brothers meant that I had natural protectors, but these same protectors were also my tormentors, at times. Teasing and food stealing at mealtimes were commonplace, but so were the more positive aspects of family time—playing in the backyard together, going to the park on the weekends with family friends, and taking summer vacations.
What made things different is that my oldest brother, JP, did not speak. And this is not to say that he doesn’t have his own nonverbal ways of communicating or that he doesn’t understand. He does understand—his communication style is just different or “atypical” from others. For example, instead of asking my mom for a glass of water or walking to the sink to get a drink of water for himself when he was thirsty, he would stand up, move towards the kitchen, and sign for water. JP developed some American Sign Language (ASL) techniques that he has carried with him since childhood, particularly to sign for food and drink.
When JP was upset—instead of articulating his frustrations through conventional communication methods of talking through an issue—he would scream. Sometimes he would scream for hours on end. My parents would guess his needs, offer solutions, and prioritize their response based on common factors like time of day, whether or he had eaten or not, activities from earlier in the day. My parents did their best and often were able to figure out his needs based on his nonverbal cues. All this is to say, that while things were not always perfect, my parents found a routine and we hummed along with daily life as a family unit. My parents were steadfast in their attention and support for my brother, JP (and all of us kids). They ensured he had access to his therapy, prioritized his needs above their own, and for all intents and purposes, they made things work. In addition to his care team, my parents had a close-knit group of family friends that they relied on for support as well as our extended family. This core group of trusted therapists, teachers, family, and friends created a safe zone for JP and for the rest of us. We didn’t have to explain his behavior and we were all accepted. JP thrived on the routines of daily life and still does to this day which is common for those on the spectrum.
Outside of the safety of our home environment, our core group of friends and family, and our standard routines, things were more difficult for JP. Family vacations, particularly those spent away from home, were challenging. Especially the trips that involved long car rides and when we visited areas that were remote or off the beaten path. Not only were they difficult for JP, at times, those trips were unbearable for us all. I recall one vacation to Minnesota where we stayed in a group of cabins on the lake with close family friends. It was a picturesque lake with fishing, hiking, and swimming.
During our visit, we decided to venture into town to do a bit of shopping as a family and JP had a meltdown. He was likely overstimulated by his environment, or perhaps he was just in a funk, but he had a screaming tantrum that I will never forget. His outburst attracted an audience of onlookers, people stared, pointed, gawked. Grown-ups snickered and made comments under their breath. I was horrified and embarrassed. I was young, under the age of 10, but will never forget how adults (who should have known better) acted towards us. The onlookers, to their credit, had likely never seen an outburst from a teenager like this. At the time, JP was in his early teens. He looked like any other “normal” teenager. He didn’t have a physical disability that made it obvious he was different. He screamed and flapped his hands during this display that went on until we left the mall to go to the car where it was decided we would abort the shopping excursion and forgo souvenirs from this trip.
I offer this example not for pity or sympathy, but to explain what it is like to be treated like an outsider or a group categorized as “other”—a deviation from what is considered “normal.” As individuals within a family unit, we each had our own way of processing these interactions— of which, there are too many to count. I didn’t blame JP for his outbursts, though, at times I didn’t understand them. I accepted him for who he was and tried to support and protect him the best I could. For me, this often meant carefully selecting my friends to ensure I wouldn’t bring anyone into our inner circle who might mistreat JP. Even though I was a younger sibling, I was a protector and an advocate—a voice when he needed someone to speak up for him.
My mom and dad often would console us by explaining that, while it was not our responsibility to explain or to educate other people about his condition, we could choose to use our voices to inform others and empower JP.
JP taught me from an early age the importance of putting others before myself, to be compassionate, empathic. And, most importantly, JP helped me learn to lead with kindness and acceptance towards others in spite of our differences. He may never have a conversation with me, but he has a smile that lights up a room, and he contributes and communicates in his own way.
JP is also part of the reason for my career path. I joined the PresenceLearning marketing team in 2016 because I was attracted to the company, like so many of my colleagues, for its mission to support students with special needs—students like JP who require special education-related services and who deserve to be treated with care, compassion, kindness, and most of all, respect and acceptance.
For more of our coverage about Autism Acceptance Month, read:
Our new series, “PresenceLearning with a Purpose,” intends to capture the many employee stories that give voice to our mission—we share them in hopes of advancing understanding and acceptance for all children.