I don’t usually write about the big “A” because it causes me a big “A”-anxiety. But, in light of the imminent approach of Autism Awareness Month in April and the historic 164th-year anniversary of the first publishing of Hawthorne’s The Scarlet Letter (circa 1850), I decided to transcribe my rambling thoughts and musings into the written word.
Most of us have read The Scarlet Letter. But, for those of us who haven’t done so or need a refresher, the novel centers around the humiliation of a young woman named Hester Prynne, who gives birth to a child out of wedlock in Puritanical Massachusetts. She is forced to stand on a stage before the townsfolk for three hours, donning a white dress emblazoned with a stark, garish, red “A” (for “adultery”), clutching her bastard child and enduring the scorn and mockery of her village.
As the parents of children with Autism Spectrum Disorder (ASD), we (especially, mothers, I have found) feel like we are wearing this glaring, blinding, mortifying “A” (for “autism”) if not across our chests, then branded within our souls. We carry this burden of shame with great sadness, remorse, and at times, despair. But, why do we subject ourselves to carrying this cross? Why do we force ourselves to do this daily “walk of shame?” Are we a bunch of self-loathing masochists? No, I don’t believe that’s it.
However, there is no simple, clear-cut answer to the aforementioned questions. I contend that rather a myriad host of reasons explain this phenomenon. First, any mother of a child with ASD who has read at least one book on autism has been forced to encounter the theories of the infamous Dr. Bruno Bettelheim (or as I like to call him, “the evil quack named Brutus”). Although Dr. Leo Kanner played an integral role in the conceptualization of the notion, it was Brutus who was primarily responsible for publicizing and championing the term, “refrigerator mothers,” in the 1950’s and 1960’s. He deemed the mothers of children with autism as so-called “refrigerator mothers,” portraying them as unfeeling, callous “cold fish” who rejected their babies and denied them of the love and affection that they deserved. These “refrigerator mothers” were to blame for causing their children’s autism (By the way, it is easy to vilify Brutus, but he did have a hard life, spending time at both the Dachau and Buchenwald concentration camps, and then, later in life, strangled himself to death reportedly due to acute depression.). Next, despite a recent rise in awareness, we are still grappling with that good ‘ole stigma of “classic autism,” envisioning a rocking, head-banging, possibly, drooling child who faces the corner of the room, babbling incoherently and refusing all human contact.
Further, we are forced to deal with “the Hollywood version” of autism which began with the 1988 epochal movie, “Rain Man,” whose title character was a brilliant, yet freakish autistic savant. Casting Dustin Hoffman as “Raymond” might have inadvertently done our population and cause a disservice. While his stellar performance brought awareness to autism, it misled much of the public to believe that individuals with autism were all savants, or super-smart number whizzes with little to no affect and disjointed speech. (Had a lesser actor portrayed the character of Raymond and delivered a far less memorable performance, then perhaps, such an indelible mark would not have been made on the masses’ consciousness!) Nowadays, you can’t watch television without encountering the quirky, yet endearing sidekick with Asperger’s. He/she recites statistics with precision and makes staggering mental calculations, exhibiting little to no social skills. His/her idiosyncratic eccentricities are graciously tolerated by his/her more typical counterparts.
Further, there is the real-life example of having to contend with the ubiquitous, snickering, disdainful mother who is line behind you at Target or Toys R Us with her well-behaved, typically-developing children. She gives us “the evil eye,” determining that we are “unfit mothers” who cannot control their children’s disruptive, tantruming behavior. Then, she dismisses us with a judgmental, disgusted shake of the head. These are just a few of the reasons that I could enumerate.
However, regardless of the reasons behind our shame, we carry it every day, wherever we go. Some days, it makes us want to curl up in a ball and cry, and other days, it makes us want to stay and hide under the covers, where it’s safe and warm and no one can say anything to hurt us or our children.
But, I say, “No more!” I am beaconing for a call to arms among parents of children with autism. Let’s revolt against preconceived notions and declare war upon the ugly stigma of autism. Let’s wear the scarlet “A” with pride and valor. Instead of a badge of dishonor, let’s wear the letter, “A,” as our red badge of courage (as it is portrayed in Stephen Crane’s novel of the same name, another required high-school read). Let’s relinquish our burden of shame, wave a celebratory flag, and shout,” I adorn the letter, A!”
We so wish that we could alter our children’s brain chemistry and reconnect those pesky neural pathways. But, how about instead, we rewire our fundamental mind-sets and change our attitude toward the big “A?” We transform our thinking into something positive. Every time we say the word, “autism,” we don’t get a sour taste in our mouths. Instead, we are tasting the sweetest chocolate, smelling the most pleasant, fragrant flower, hearing the comforting sound of the gentle waves rolling upon the beach, feeling the warmth of a salted, hot bath embrace our weary limbs, and most importantly, we are seeing the future and it is only something bright.
By the way, Hester Prynne named her bastard child, “Pearl.” I don’t think Nathaniel chose that name randomly. Instead of naming her something ironically viscous like Eve, Mercy, Temperance, Chastity, or Prudence (common names at the time), the author bestowed upon her a beautiful moniker. What is a pearl? A coveted gem among all jewels, of course, which leads me to my next thought . . .
Often, as the mother of children with ASD, I feel like I live on the isolated Island of Misfit Toys. Dear reader, I mean no disrespect toward my children, equating them with “misfit toys.” I love them unabashedly, ferociously, and infinitely, and am using this very loose allegory to make a point. Tonight is the eve of their ninth birthday, and I cannot help but reflect, what more could I have done? What more can I do?
But, back to the Island of Misfit Toys, I always loved this particular Christmas special entitled, “Rudolph, the Red-Nosed Reindeer” (1964). From nonconforming, ostracized Rudolph to the grumpy, yet harmless and misunderstood Abominable Snow Monster, I could always relate to the characters as a child. Recently, someone sent me a what-I-found-to-be a surprising gift, a Lenox ornament collection of the misfit toys. After doing a little research, I discovered that not only a reputable collectibles company like Lenox, but also the prestigious Bradford Exchange features a line of ornaments, immortalizing the misfit toys. This realization led me to ponder what constituted a “misfit toy.”
I then rewatched “Rudolph, the Red-Nosed Reindeer” for the zillionth time. I was struck by six particular characters: King Moonracer (the winged lion) leader of the Island, Charlie-in-a-Box (You can guess his abnormality!), the Island’s sentry, Spotted Elephant, footman to the King, Dolly (who appeared to be a normal rag doll, but had been abandoned by her keeper), Cowboy who rides an ostrich, and finally, pitiful wind-up Mouse who is trapped among a collection of nesting clown dolls. Before I lose you, dear reader, please bear with me and grant me some leeway here.
At times, I feel like King Moonracer, who as a winged lion, spends too much time spinning my wheels and getting nowhere fast! Meanwhile, our children can mimic Charlie-in-a-Box who seems to fit into the box dimension-wise, but neither is he entirely comfortable in his own skin nor is he quite what we expected when we first created him. Plus, he doesn’t like the loud music that his box produces and would prefer that you refrain from cranking his handle. They can also be like Spotted Elephant who has an impeccable memory, but carries around spots that do not match his gray exterior. Or, they can resemble Dolly who looks just like every other rag doll, but just doesn’t quite measure up and falls just shy of being accepted by everyone else. Further, they can be like Cowboy who awkwardly attempts to ride the ostrich, afflicted with poor gross and fine motor skills. Finally, our children can seem like Mouse who gets too wound-up too easily, and after uncovering all of his layers, he is still a rodent, and not a cute miniature clown.
Now, let’s turn this allegory on its head! Let’s drudge the dreaded Island and create a new land called the Island of Magnificent Creatures where we, the leaders, are sought-after, world-renowned brilliant inventors, not failed toymakers. We have created children who are missiles, ramming through the walls of bigotry and prejudice. They are meteorites who slam through any layers of the atmosphere that are statically stuck in or emit the stink of stigma. Our children are revered as missionaries, not misfits, who are changing the world for the better.
On this new island, IOMC, misfit toys are no longer considered broken or unwanted. They are high-functioning specimens. They are redefined as the hottest Black Friday must-buy items. Their images are reframed as highly-desirable. They elicit OMG squeals and are extolled as the NBT’s. You can’t keep them on a shelf!
Charlie-in-a-Box, is the coolest kid in town, unlike his counterpart, Jack, who can be a blowhard. Charlie, or as he likes to be called, Chuck, has the looks of Justin Bieber, and when you crank his handle, beautiful, sweet-sounding ballads or heart-pumping pop rock music emanates from his box, depending upon your musical preference. Elephant has trademarked his signature spots and launched his own exclusive fashion line. Dolly is head cheerleader/valedictorian/all-around “it girl” who, along with her entourage, is invited to all the “it VIP parties.” Cowboy looks like a rugged George Clooney or Brad Pitt confidently mounted on an ostrich, making it look the latest thing to ride. And poor Mouse shows everyone that he can move with speed and agility, can fit into very small spaces, and can make a not-so-unpleasant squeak versus the creepy clowns who are clumsy, can barely fit into cars, and make annoying, repetitive noises with their honking horns.
In this world, our children are warriors who Are Abled-bodied, Act Amazingly, Awesomely, and Astounding and Achieve Astronomical Accomplishments at All Ages. So there, all you scarlet-letter supporters and misfit name-callers! Take that, all you naysayers! Hester, you go, girl! I’ve got your back!
And, parents, cherish your pearls! They are indeed true treasures!