Sometimes life just isn’t what it seems.
There are situations where we view each other through the fishbowl of life. We watch from outside, sure of what we’re seeing. Meanwhile, inside, life is its own reality, and the days pass with the feeling of someone else watching. What someone else sees and understands may not quite be the reality of life inside. Such is often the case with families living with an autism diagnosis.
According to cdc.gov, autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. Some people with ASD have a known difference, such as a genetic condition. Other causes are not yet known. People with ASD may behave, communicate, interact, and learn in ways that are different from most others. There is often nothing about how they look that sets them apart from others, and the abilities of people with ASD can vary greatly.
April is National Autism Awareness month, a great time to shatter the glass separating us from families managing life on the spectrum. Two families offer their perspectives from the inside.
Life on the spectrum — one family’s perspective
Amanda West shares her family’s journey with ASD:
We begin to ponder the life we lived just one day before. Like permanent bookmarks, the diagnosis of ASD separates the pages of our lives into categories of before and after.
“Your son has level one, high-functioning autism spectrum disorder,” the team of psychologists reported. My husband and I took several days to process the information together privately before we shared the diagnosis with our nine-year-old son. He was sitting at his computer desk designing an elaborate video game. When I told him, his fingers froze on his keyboard. He looked right at me and said in his matter-of-fact way, “Well, that explains it,” then turned toward the screen and kept right on typing. Later that evening, he and I watched the movie “Temple Grandin.”
“Mom,” he said, “she has autism like me, but I don’t act like her.”
I explained that if you know one person with autism, you know one person with autism.
Although I know everyone’s experience with ASD is different, the last seven years have been years of temporary regression, enormous growth, physical and emotional maturity, and, most of all, lots of therapy. He underwent occupational and speech-language therapy to recognize facial expressions, decipher body language, and understand idioms and words with double meanings. He underwent physical therapy to strengthen his fine motor skills and overall coordination. Our family feels blessed that he was able to have these necessary interventions provided by Jones Therapy in Shelbyville.
As a 16-year-old, he is a witty honor roll student, a member of the National High School Honors Society, has a steady group of friends, is still highly creative, and is working toward earning hours toward his driver’s license.
From the inside out — what they’d want you to know
Anna Sapach, a single mom to a young child on the spectrum, clarifies things the bowl has distorted from our view and our understanding of those with autism: From the outside perspective, ASD can be embraced or judged in various ways. It can be embraced by acknowledgment and kindness or judged by silent stares and gawky remarks.
There’s a multitude of degrading false information that has distorted the image of individuals with autism. Information and education are powerful tools that can guide or mislead us. The volume of errors and misdiagnoses throughout history, even with advanced testing and medical progression, has left a paper trail so long that it can collectively fill enough books to build a library. That happens when we judge the cover without picking apart the pages first.
If I were to ask you, the reader, what autism looks like to you, what would you see? Without education or background, where would your mind lead from only what the eyes can see? Would you see a child stimming (arm flapping, spinning in circles, tugging on clothes or ears)?
Would you see a child trying to self-soothe in an environment that sets their senses on fire? Or better yet, an environment that they’re enjoying, and offer them a smile accompanied by a wave? Would you see an adult in sensory overload (nail biting, popping knuckles, repeating words) at a music store and presume they’re behaving oddly? Or, would you see someone trying to manage anxiety in a loud place because they wanted to bravely learn how to set their noise-canceling headphones aside and embrace change?
With this insight, do we embrace a change in our neurotypical day-to-day environment, or do we scratch our heads and turn away?
Coming from a mother to a son with autism, all we ask is that you show kindness. You don’t have to read every article or order a stack of books on ASD to become aware or understanding.
If it weren’t for my son, I wouldn’t have the knowledge I do today on autism. He saved me from the ignorance I held for years, unknowingly blinded by the social stigmas these adolescents had been painted by.
Misguided mindsets distort the beautiful picture that is the wonderful and complex world of life on the spectrum.
No more walls
Shattering the walls that separate us from ASD families and coming together as a community that longs to enter their world’s beauty and struggles is a priceless gift. It’s a gift to them and a gift we receive from them when we allow them to share our lives.
Be on the lookout for opportunities to share life on the spectrum. GN