Much to my husband — and my children’s — chagrin, my time spent in search of internet gossip and superficiality far exceeds the amount of time actually spent in search of things deemed worthwhile and productive: Serve lunch at a local shelter; drive senior citizens to their doctor appointments; use recyclable bags to help save the environment; feed and entertain my children on a timely basis.
One could argue that my time would/should be better spent doing research on geo-political hot-button issues like fracking (aka horizontal drilling), and in its most literal sense, I do! Copious amounts of my research time is dedicated to finding out about the latest “horizontal drilling” in Hollywood, and “who’s fracking who?”
For as much criticism the internet receives, the internet is also to thank for helping further shape my frame of reference as it relates to autism. Whilst mindlessly and endlessly surfing one day, I came across a very simple, yet powerful affirmation on Pinterest.
Ordinarily, I’m as much inclined to go the affirmation route as I am to sit around a campfire, sing “Kumbaya” and allow my armpit hair to grow so long as to be able to braid and bead it. But, this affirmation was different. The affirmation took my breath away. This affirmation said, “If you’ve met one child with autism, you’ve met one child with autism.” How true, and how often we forget.
The naked city
It was then I realized that my son’s story — which happens to be an upbeat, hopeful story — is but one narrative. My narrative. To paraphrase the final narration of the 1948 film noir The Naked City, I am well aware that “there are eight million stories in the naked city. [Ethan’s] is just one of them."
Just because you’ve “met” Ethan, doesn’t mean you’ve met every child with autism. My narrative is based on Ethan’s passion for music, and lucky for us and lucky for Ethan, music will be his way out of his world, and into our world.
There are millions of other stories of children on the spectrum whose passion has yet to be harnessed. To dismiss or ignore children across the wide range of the autism spectrum is both a grave injustice and disservice not only to them, but also to us as empathic human beings. There are many other children on the spectrum; it’s time you met them, as well.
Meet the kids on the spectrum
- Meet the child who has hour-long tantrums.
- Meet the child who laughs happily while playing alone.
- Meet the child whose rigidity means everything must be done exactly the same, day in and day out.
- Meet the child who finally adds a new food to her limited repertoire.
- Meet the child who has gastrointestinal issues and screams out all night in pain.
- Meet the child who eats a nut-free, gluten-free, wheat-free, dairy-free diet.
- Meet the child who yells in frustration at his inability to fully communicate.
- Meet the child who just said his first full sentence.
- Meet the child who is sneered at by some in the school hallways.
- Meet the child who is embraced and included by those at school.
- Meet the child with such a high pain tolerance — and inability to express herself — that sometimes strep throat or ear infections require hospitalization.
- Meet the child who never wants to get an immunization because of “the pinch.”
- Meet the child with no sense of danger, who darts out into the street without thinking twice.
- Meet the child who is so apprehensive, he won’t even try something new.
- Meet the child who unlocks the front door, wanders off, and is found in a neighbor’s kitchen, or the local swamp.
- Meet the child who contentedly sits for hours creating artwork or lining up objects.
- Meet the child who repeats the same request over and over and over until her parent screams in frustration.
- Meet the child who repeats the same request over and over and over until his parent relents. (Also in frustration.)
- Meet the child who refuses to make eye contact, because to look at a human face feels like touching broken glass.
- Meet the child who stares, or stands inappropriately close when talking.
- Meet the child who laughs inappropriately when told bad news.
- Meet the child who cries when told bad news.
- Meet the child who flaps her arms or bangs her head against the wall because self-stimulation is comforting.
- Meet the child with age-appropriate motor skills that allows him to keep up with the other kids at recess.
- Meet the child who runs in circles, spins, stares at shiny objects, must hold a comfort object or wants to be alone.
- Meet the child who comes alive with applause from a crowd.
- Meet the child who hoards various household products, squirts out every liquid from a bottle, or tears the heads off dolls. Then, meet the parents of a child left to clean everything up.
- Meet the child who neatly lines everything up in size and color order.
- Meet the parents of a child who cries when their child is excluded from birthday parties.
- Meet the parents who rejoice in a small gesture of understanding, kindness or gratitude.
- Meet the parents of a child who, every time they drive by a baseball or football field, inherently know that their own child might never partake in these time-honored traditions.
- Meet the parents who coach their child at a team sports.
- Meet the parents of a child who, in order to go out to a restaurant, must always have a Plan A, a Plan B and a Plan C in place, just in case…
- Meet the parents whose children understand what behavior is expected in public.
- Meet the parents of a child who spend hours and hours at therapists and doctors to help regulate one behavior or another.
- Meet the parents of a child who no longer needs a certain type of therapy.
- Meet the typical sibling of a child who sometimes resents — often in silence — the disproportionate amount of parent time their atypical sibling receives.
- Meet the typical sibling of a child who loves and supports her atypical sibling unconditionally.
- Meet the typical sibling of a child who is forced to defend, explain, rationalize, or be responsible for their atypical sibling’s behavior.
- Meet the typical sibling of a child who knows that the ignorance of others can’t be changed.
- Meet the grandparents of a child who can’t or won’t accept their grandchild’s diagnosis, because that diagnosis is just too painful.
- Meet the grandparents who brag to their friends about how special their grandchild is.
- Meet the families of a child who must sacrifice their last dollar for therapy or medical care, at the expense of everything else.
- Meet the families who must sacrifice. Period.
- Meet the parents of a child who spend time crafting “social stories” so their child will better understand what is expected and what to expect in different situations.
- Meet the parents of a child who knows what to expect and goes with the flow in new situations.
- Meet the parents of a child who consistently hit brick walls with insurance carriers, who happily take their premiums, but make them jump through hoops to get autism expenses reimbursed, if autism expenses are reimbursed at all.
- Meet the parents of a child who live in a state where autism has mandatory coverage.
If you’ve met one child on the autism spectrum, you’ve met one child on the autism spectrum. There are a million stories to be told. But rest assured, each story is a cliffhanger that hopefully will find resolution in a not-too-distant chapter.
More about autism
Autism rocks the house
An ode to the birthday girl through the eyes of autism
Autism: You gotta be in it to win it