“I refuge to apologize for simply being who I am.”
For years, Charlie had been trying to make sense of all the things which made him so different from everyone else.
He described it as, “Finding myself entangled in an invisible net I could never quite escape which constrained me in ways I could never quite comprehend.”
At 51, Charlie diagnosed himself as autistic. His diagnosis was confirmed six years later. The label, Charlie said, made little difference in how he perceived himself.
He’s the same person he’s always been.
He’s always found meaning in the presence of cats, in searching for the truth through literature, and in his translation of the world through writing.
Understanding the traits of autism and their impact on his life brings Charlie more clarity on the questions that troubled him for decades.
Prior to his diagnosis, Charlie said, “I often felt as if I’d been born in the wrong time, or on the wrong planet.”
He considered himself an outcast, even among the other outcasts.
Yet Charlie accepted the different ways in which he perceived and thought about the world, long before his diagnosis. He stopped wondering if he was “literally crazy” and started validating his differences.
“I refuse to apologize simply for being who I am,” said Charlie.
Today, and through the month of April, we celebrate Autism Acceptance Month through listening to and sharing the stories of autistic people like Charlie.
What is Autism?
According to the Center for Disease Control and Prevention (CDC), Autism Spectrum Disorder (ASD) is a group of developmental disabilities characterized by differences in the brain. While some autistic people have a known difference, such as a genetic condition, other causes are unknown.
Autistic people may behave, interact, communicate, and learn in ways that are different from other people. The symptoms of autism manifest within the first three years of life, though they may improve over time.
Since autism is a spectrum disorder, each autistic person experiences their own unique set of strengths, abilities, needs, and challenges.
How are we celebrating Autism Acceptance Month?
Given that ASD is the fastest growing developmental disability in the world, the movement to educate local communities and raise awareness about autism has grown tremendously. While awareness holds its purpose in educating people about ASD, acceptance comes from a place of understanding people’s authentic experiences.
Here at HBH, we’re bringing forth the power of acceptance and inclusion for the autism community by sharing Charlie’s lived experience with autism. We hope that the following story will broaden your perspective of people with diverse lived experiences, and encourage you to listen to and uplift autistic voices.
The following story is not a case study, but rather a story from a real individual resulting from a candid conversation. Their name has been changed to protect their privacy.
Charlie’s early experiences with Autism Spectrum Disorder
Since Charlie was born with crossed eyes, and couldn’t identify the letters on the eye chart, his parents taught him letters at an early age.
“Before long, I realized there was information hidden in words,” said Charlie.
Pestering his parents for scraps of information, Charlie taught myself how to read. By the age of five, he was a regular at his local library.
His selection of books depended on whatever topic caught his attention, and he wouldn’t move on until he found a new interest. Science fiction, Charlie said, “Seemed like a serious effort to predict the future.”
He also sensed that reading mystery’s would help him learn how to solve mysteries, and reveal the truth.
By the first grade Charlie was able to read “adult books,” and was labeled a genius.
“At the time, I was a very strange kid. Looking back, only my eyesight, my status as a ‘child prodigy,’ and my parents’ determination to brush off any suggestion that there could be something wrong with me kept me from ending up with what, in the 1960’s, would almost certainly have been a total misdiagnosis,” said Charlie.
Charlie facing the truth
Charlie learned early on that other people, even adults, couldn’t be trusted to get the facts right.
This was made evident in the second grade, when Charlie sensed a strong smell of gas in the boys’ bathroom.
His teachers insisted he was lying, the gas company refused to listen, until one day, the police blocked off the entire road. They said that the gas lines were in such poor condition, the entire street could blow up.
Charlie’s senses proved accurate, but no one questioned his sensory differences. Charlie felt as if he existed on a different planet.
Years later, during a visit to the eye doctor, Charlie’s sensory differences were brought to light.
He was no stranger to eye exams, and always hated the bright lights used.
The specialists were always frustrated with his squeamishness, but this time the doctor apologized to Charlie.
He explained to Charlie that after taking high resolution photos of his eyes, he could see evidence of light sensitivity.
The doctor’s apology confirmed that his sensory issues were medically viable. And while the news didn’t surprise Charlie, he realized how ignored he’d been throughout his life.
Charlie’s newfound connections
In an intellectual sense, Charlie knew that other people were just like him, but he never felt that way.
The moment he looked at Pollyanna, his first kitten, Charlie sensed something he’d never felt before.
Charlie described it as, “Encountering a fellow human being who was looking back at me.”
He loved Pollyanna as much as she loved him.
Charlie has since owned cats.
“They remind me of everything that is right in the world,” said Charlie. “They too, live in a world they never made.”
Charlie’s also always sided with the outsider. He could never understand his father’s bigotry. And while he didn’t know much about World War II, he instinctively sided with the Jewish people against the Nazi’s.
Charlie also realized later in life why Michael, his first friend, befriended him. Michael saw that the other children in school were picking up Charlie, and reacted in an opposite way.
Decades later, Charlie would come to find refuge in the company of librarians, and in his community at Church. At the very least, these people make an effort to understand him.
Charlie’s discovery of writing
Charlie’s fourth grade teacher caught onto his logic and inclination toward accuracy, and
introduced him to historical fiction. He later would put his research and problem solving skills to use through genealogy.
The same teacher also introduced Charlie to creative writing, which sparked a lasting fascination with writing, pens, and the process of printing.
By high school, Charlie’s obsession with numbers and facts was replaced by words. He was affirmed as a writer.
Over the years, Charlie’s developed an archive of books, poems, short stories, and essays. He hopes to find a publishing company which might house a digital copy of his work.
Charlie’s experience today
“My mind in general is far different from anyone else around me,” said Charlie.
When it comes to spoken language, Charlie’s immediate reaction is to interpret words and phrases literally. Of course, within the English language, there’s an extensive range of slang words, phrases, puns, and paradoxes.
When the conversation moves too quickly, and there isn’t time to think of an answer or response, Charlie can become tripped up. This can still be challenging in social situations.
His sensory challenges are extensive, and many of these are the result of his parents, classmates, and teachers inability to understand him effectively.
As for his stims- repetitive or unusual motor movements, use of objects, or speech- Charlie said his are, “low-key, if not hidden.”
Certain types of eating can cause his urge to stim, and like many autistic people, Charlie said his sugar craving is beyond typical.
And while Charlie’s dedication to the truth can be far more extreme than others, he can’t seem to shake this attitude.
What Charlie wants the rest of the world to know about being autistic
“We may not be able to “read” neurotypicals, but they can’t “read” us either, or understand us. To them, we seem as if we lack empathy; to me, it looks very much as if the rest of the world lacks empathy. In many ways, our experience with everyone else is a mirror of their experience with us,” said Charlie.
Being autistic, and neurodivergent, manifests in all different ways.
Given that autism is a spectrum, no fixed label or level of support will fit each person. There’s an infinite amount of diversity, strengths, challenges, and potential within each individual, and it’s our responsibility to honor that.
We encourage you to acknowledge Autism Acceptance Month with the understanding, respect, and empathy that is necessary to not only help individuals with autism, but also make the lives of caregivers and family members easier.