Sensory Stuff

Our Autistic Expression

How did a Transformers movie help me to understand that I am neurodivergent, and put to rest an oft-voiced complaint about me in social settings? Read on to learn this, and other aspects of our sensory experience, in the latest edition of the ongoing series Our Autistic Expression.

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Because of our late diagnoses, and our tendency to ask innumerable questions about ourselves and about the world, once we both understood that we might be neurodivergent, we sought out indices of our own behaviors (and experiences, tendencies, thoughts, etc) for comparison. As anyone in a similar position will understand, we are endlessly self-aware and search for causal chains for logical explanations. We sought the wisdom of anecdotal experience, alongside reading mountains of evidence-based clinical research and white papers on neurodivergence & autistic expression.

Sensory processing is of great focus in both personal and scientific research. I had never considered my own sensory processing as unusual or atypical, and what I read forced me to think much more deeply.

A dawning moment that I was assuredly on the spectrum was sensory in nature, a realization as epic as the intent of the Michael Bay movie on which it centered. That a Transformers movie should be the catalyst for my self-awareness is both fitting and humorous.

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Like many, I often went to the movies, prior to the streaming age. I always enjoyed the experience but could hardly remember what I’d seen afterward. I couldn’t recall plot details or character names. I had always attributed this to my mind fixating on details it found more pressing – the choices the set designer made, how the composer created suspense, etc.

Despite my inability to nap (lifelong inability, you can ask my mom) and my inability to fall asleep in public, or sleep sitting up, during the biggest action movies, I always fell asleep. No matter how much I’d looked forward to seeing the movie, no matter how important it was to me that I remain awake, 30 to 45 minutes in I was dozing. I never made the conscious decision to close my eyes, never felt bored, tired, or disinterested, and yet, again and again, inexplicably, I was told by those accompanying me, “You passed out,” “You fell asleep,” “You were out like a light,” etc.

And just as inexplicably, I’d awaken during the credits. Star Wars episode 4 is my first recollection of this happening, but many people found that movie boring (sorry fans), so it didn’t surprise me. It happened again during action-adventure movies, most notably during one of the Transformers movies. (I really don’t know which one.)

I was sitting in the theater, excited and impressed by the intense special effects, digital art having come so far in such a short time. It was a magnificent take on the toys I coveted from the boys’ toy aisle as a child in the early 90s.

No less than 10 minutes into the movie, I was having trouble keeping my eyes open, despite the double espresso I’d had an hour before. I fought the sleepiness as long as I could. My body rattled and my skin buzzed from the voluminous surround sound, literally shaking and thumping along with every footstep and every collision. My body pulsed chaotically, deep in my muscles, entirely out of my control. My eyes grew heavier as the bright, colorful, highly pixelated action sequences penetrated my retinae. The last thing I remember before “falling asleep” was the sensation that my heart was going to race itself right out of my rib cage.

At the roll of the credits, my eyes popped open and I was awake. My skin no longer trembled. My muscles twinged, like I’d run a mile without stretching first, but otherwise I felt nothing but shame. The person I was with, someone I was dating at the time, was furious with me afterward. He’d spent money on these tickets, after all, and the least I could have done was tell him I wasn’t interested in seeing it. I had no way of explaining – I was interested!

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With the understanding that I might be neurodivergent, a decade later, this was the first experience that came to mind. I hadn’t been falling asleep out of boredom or exhaustion. And I wasn’t “waking up” at the credits because I sensed people moving around or heard the end roll in my sleep.

I was blacking out from something the community refers to as sensory overload.

The intensity of movies with rising action, incredibly loud sounds, and flashing, colorful images were literally overloading my body’s ability to keep track of all of the sensations it was experiencing. My body was overwhelmed with the inability to turn down or tune out the noise, so to speak. Consciousness requires a lot of neurological resources, and my body’s tendency in these rare and extreme situations was to conserve resources, by shutting down awareness and running on autopilot.

I was waking up at the credit roll because I was never really asleep. I was experiencing the entire movie without consciously having to process all of my sensations. The moment the sensory experience dulled, the light switch flipped, and I was ‘awake’ again, consciousness returned to me.

Likely, my inability to remember any movie is a facet of this as well. Storing anything in short-term memory takes resources too. I like the analogy of a computer’s RAM, or Random Access Memory. If all of my processing power is being used to touch base with my skin, muscles, sights, sounds, etc., then likely the resources (or RAM) available to also catalog memories during these moments is slim.

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I have no proof of this other than that of my own experiences. I don’t know if there would be a safe way to prove it. Now I just avoid Michael Bay movies and most of the trouble in this particular regard has subsided.

My desire to KNOW was strong and had been powerful in the past. Did my awareness of the issue remove the sensitivity? I wished to go willingly into the belly of the beast once more, having gained this knowledge, trying desperately to know myself.

I chose a 4D action movie, which purported to be a sequel to one of my favorite movies, starring Tom Cruise. (It was not a sequel.) In the 4D theater, the seats move to replicate the character’s experience on scene. If a character falls, the chair bumps. If a character leans over a railing, the chair tilts forward. Scents and sprays are directed at the audience to enliven the experience further. I figured, it may not be Michael Bay, but if I’m right and this is actually sensory overload, the added scents, smells, and movement should make up for the loud (if not abnormally loud) sounds and vivid (if not entirely digitally wonderous) imagery.

The moment before I blacked out, my back was crawling with sensation as rats devoured Tom Cruise in a London alley.

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It isn’t just movies. Concerts are a special sort of shock as well. When I feel the bass in my chest and see the lights strobing, there’s a chance I’m a goner. I remember the first half of an AC/DC concert I attended, and then my date forcibly shaking me and lecturing me all the way out to the parking lot about the stupidity of over-imbibing. (I’d had 3 beers, not a drunken black-out’s worth, but seeing me black out, he’d assumed many more.)

Sensory overload is truly a difficult thing to understand if you haven’t experienced it for yourself. It isn’t a headache under a bright light or the grating shudder when hearing nails on the chalk board. It is the overwhelm of sensory input combined with the inability to process all of the data coming through.  And it is exhausting.

In my daily life, I don’t experience sensory overload very often, and I have since learned how to manage my environment in order to cope.

  • I avoid movie theaters generally, and the rise of big screen TV has made movies much more pleasant. When I sense a movie is “too much” (eg a horror movie with a lot of blood and suspense), I sit sideways and casually watch the movie askance.
  • My office and bedroom offer a variety of lighting options, to stimulate or relax sensations, but in general I prefer yellow light to bright white light.
  • I prefer dark paint to light paint, especially in relaxation settings.
  • I’m discerning about the clothing I wear, textures in particular, so that I’m not adding to my sensory load by feeling an itchy synthetic draw on my neck or hips. More about my fashion-related autistic expression here.
  • I sleep with a mask to darken the room, cover digital lights with black tape, and have replaced a noisy air conditioner for one with a quieter motor.
  • I keep gentle, pleasant smelling essential oil or lotion with me at all times, in case an outside smell is nauseating.
  • After a long day, I sit in the dark to recover, with no screens and no sounds, just something to hold my focus, like a sketchbook.
  • I take frequent walks in nature, which only ever relaxes me.
  • I avoid the beach and its vastness.
  • I seek out hugs or personal space when the needs arise.

There are rare times when I need to turn the lights up, the sound on, and create an environment rife with multiple inputs. I’m not entirely sensorially wimpy, so to speak.

The Scientist can never get enough sensory input. Curiously, like me, he really enjoys nature but for different reasons. Pathways among the trees provide an endless amount of visually stimulating textures, colors, and random variations; the outdoors wrap his other senses pleasantly as well. His ideal day is spent on death-defying rollercoasters in the sun with loud music blaring. After a long day, he needs an unfathomable (to me) amount (say, all the lights on, loud anime, a handheld video game, a heating pad, & a fizzy drink). As partners, this makes our living situation interesting, and at times, challenging.

As always, with verbal cues and self-awareness, we do our best to make it work and keep it working.

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About the Series

I am neurodivergent. Neurodivergent is more appropriate terminology than autistic, a term which derives from the Greek word autos meaning self, a term intended to imply isolation from social interaction. While the definition of autism has expanded over time, I feel it’s more flawed and divisive than not (as labels typically are). While I do still refer to myself as autistic on occasion, I’m much more likely to label my notable traits as autistic, as in “this skill or tendency sets me apart”, and to describe myself generally as divergent.

My partner, also neurodivergent, feels similarly. We were both diagnosed later in life, in our mid-late 20s, after running the gauntlet of other health and human service concerns and crossing the eventual “must be autism if it isn’t these other things” finish line. I wouldn’t wish either of our journeys toward diagnosis for anyone, years rife with stress, mislabeling, depression, psychosis, serious medical ailments, and general social othering. The medical and psychiatric communities have already begun to recognize neurodivergence earlier, and with more sincere gender blindness, to provide individuals with the tools, resources, and assistance they require. To “make it” in our society as a person who falls many standard deviations outside the expected average on related scales relies on an individualized approach to education and healthcare. (A much larger conversation for another day.)

Sincerely,

Sunshine

Of Www.sunshineandthescientist.com

Creator of Kid Lit Motivates: a fledgling business on Long Island providing customized educational resources from a unique perspective of education

Author of Maddie Steiner, Fashion Designer

Crafting a Trilogy: Origins

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In figuring out what I wanted to be when I grew up, the journey took many twists and sharp turns. In addition to merely considering many different fields, I worked more jobs than anyone I know at my age. At the tender age of 34, I’ve crossed more occupations off the list as “attempted, not quite right” than other people will attempt in a lifetime. (And more power to them. I sincerely believe it’s possible to graduate high school, know exactly who you are and what you’re good at, and find success in that career for a lifetime. In my experience though, it’s not possible to do that and also be me.) I’ve been great at a lot of things, I’ve done a lot of introspection and reflection, but I’ve never felt sure-footed on my career journey until recently.

Other people seemed to know my path long before I did. It’s a consensus I’ve heard since I was literally 5 years old, back when I thought I’d grow up to be an Egyptologist, or an architect, or a dancer. Many people pointed to me and screamed “You’re a Writer!” I was chosen to write and speak for groups, chosen to receive writing awards, pointed at by veritable strangers who heard me talk for a few minutes and declared, “You should write a book.” Many teachers requested acknowledgment when the then-imaginary book was published. On any number of subjects, people indicated, “If you wrote the book, I’d read it.” The constancy of their collective belief made it impossible for me, rebel with 1,000 causes, to agree and declare “I am a writer. I will write a book.” It seemed ludicrous that I should admit that everyone else, strangers even, knew me better than I knew myself.

So I finally did it. I wrote a children’s book, a picture book, about starting something new, setting a goal, and working to achieve it. I turned a poem I’d written about crafting into a story about a girl with a dream. I hired an illustrator to see my vision through. I self-published and advertised. Instantly, I had big dreams for the book and for the universe it insinuates. I created a brand, I set up at festivals and fairs, and I talked about my motives and what I know to be true with everyone I encountered.

The resounding, unanimous response was “This is the book? Is this all you have?” Disappointment and confusion were evident in their incredulity.

I do indeed have other kids’ narratives ready to go, stories that need editing, illustrating, and querying, stories that I still hope to air out and share with the world.

Amidst the constant inner turmoil of “Finding Myself” in my late 20’s, I conceded. I thought back on the words, wise and otherwise. I remembered the picture book series I’d invented when I was a kid, the many hours I spent running my fingers down spines in the library stacks, and how I’d often pass the time by improvising radio plays starring multiple people and a Foley artist, all played by me and my indeterminate accents.

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Unfortunately though, this first book left me, and my readers, unfulfilled. I demonstrated my way with rhythmic meter, rhyme scheme, and teaching empowerment – a lifelong pursuit – but it did little to encompass the creative waterfall crashing down in my brain. I was getting more out of talking about my values with adults than I was out of creating books and resources for kids. I began to wonder if I had a novel in me, a novel to be enjoyed by the adults saying “I would have loved this picture book when I was kid.” Rather than writing for the next generation in a wistful way to make up for lost time, perhaps I could write to their parents instead – give them the love letter to our existence that encompasses my thoughts and feelings about life itself.

A lofty goal, to be sure.

The Scientist and I, searching for ways to pass the quaran-time together, began to talk about writing a book – but the subjects varied. He’s more comfortable in the realm of (who’d have guessed it?) academic nonfiction, and we may have a joint project in us yet about neurodiversity and the natural world. Neither of us was very motivated to write it, though, and the idea was shelved.

Then, one day, we started with the What Ifs of fiction – what sorts of books do we love? What sorts of stories do we crave? What hasn’t been done? A speculative, fantasy world which existed within and expanded upon our own called to us- a story of one man, that evolved into an epic battle, that began to cross time and existential planes. We stuck post-its to a posterboard and drew circles, connected by arrows, which became webs. I doodled in the margins of our collective, creative brain and he drew more tethers across environments and ecologies. We tried to explain to mutual friends but it wasn’t something that could lend itself to a this-then-that narration. They needed more. They wanted more. We had based our idea in our mutually shared interests and dedicated the themes to our values and suddenly we knew we had a trilogy on our hands.

A year passed and the idea stagnated. It would come up when we were hiking or on a road trip, but the actual process was mysterious and elusive.

I’d sit down to write a scene from the trilogy and feel overwhelmed by the scope of it.

I’d start on page one – I must have written 12 different page ones.

I’d bounce ideas off the Scientist who would look at me dumbfounded for reaching the story further and further outside our original scope. Was it fantasy or science fiction? Was it comedic, horror, speculative or historical? Was it intended for young adults or more mature readers? Was it a novel, a graphic novel, or something else entirely?

I’d awaken in the middle of the night (or somesuch) and think – it’s not THIS kind of story, it’s actually a parody of THIS kind of story, and I’d scrap every short piece and description, and start it all over again. Maybe it wasn’t a trilogy – it was a series of short stories. Maybe it was scifi, not fantasy. Maybe it was 2 separate ideas that don’t actually work together.

And so, as I’ve done with every bit of spiraling doubt that surrounds every project or interest I undertake, I researched process. How-to’s and what-for’s. For nearly another year, I took notes on saving the cat and creating a screenplay, looking for tropes in every movie and series, learning about arc, plot, and character development, and revisiting some of my favorite fictional works for clues as to how they were put together.

One answer kept coming up: There is no right way. There are no right answers.

There’s no one way to get a story of this magnitude down on paper. It won’t be written from start to finish. It can’t be outlined like an academic work or written in a single draft. Much of what is written first won’t be included in the final edit at all.

It isn’t like building a house – get the pieces, put them together in a reasonable order, stand back and admire the work. I could watch and read all the house building tutorials I wanted, but no one had ever built THIS HOUSE before.

Writing a story like this one is more like growing a garden of wildflowers. Start with the idea – I want to grow flowers – sculpt out the general flower bed-fertilize and aerate the soil, plant seeds and nourish them – then see what grows from there. What thrives and what outcompetes the others. What attracts the right insects and meshes well with the natural ecology. What would do better transplanted into another garden patch.

To paraphrase the great Neil Gaiman who was paraphrasing someone else he considers great, You never learn how to write a book, you only learn how to write THIS book. And to paraphrase Neil Gaiman again, you write the story to find out how you feel about the story.

And with that final burst of confident steam, I know, I’m writing this fantasy trilogy. It may take years. It may look and feel entirely different from where it is currently. But the more I write, the more I confer with the Scientist, and the more I speak about it, the more confidently I feel that I have something here. I am writing a story that needs to be told, a story that feels important, a story that keeps me going back every day, to take notes, to read research, to create settings and scenescapes and tonalities.

I’ll keep track of my journey here under the subheading: Writer, Meet the Internet.

Hey look Mom (and all the others out there who said so) – I’m a writer!

Everything Fashion:

Our Autistic Expression

In this installment, I recap all I’ve discovered about myself and the Scientist in all our preferred, fashionable glory.

Your Fashion is Not Our Fashion

We are nonjudgmental and do not hold anyone to the standards to which we hold ourselves. It’s critical you understand this if you read on.

Photo by Tamara Bellis on Unsplash

A Time and a Place

The destination, setting, and intended mood dramatically affects the choice of attire. The Scientist and I have both been accused of being somewhat cartoonish in our outfit choices, but only because we have a deep-seated desire to match the environment — a desire that ironically makes us stand out. I wish to fit in, he wishes to blend in (I think these are different.)

Where most people have something of a capsule wardrobe or a set style that they wear for most things, or a seasonal approach, or an affection for neturals, our wardrobe is entirely contingent on the expectation, the setting, the mood, the location, the crowd, etc. Each of these factors holds weight.

I’ve never owned, and never will own, an LBD.

Before the Event

Before a job interview, party, hang-out, family visit, date night, etc., I don’t worry over the directions, the people, the food, or anything else. I consider what the outfit should communicate.

It’s a function of my anxiety, insecurity, preparation, and self-control — my autistic expression. I can’t control most variables, but I can doll myself up to look the part.

If I’ve never been to a place before and can’t see pictures ahead of time, or if I’ll be with people I don’t know, I fret about wardrobe.

Standing Out by Trying to Fit In

It may be hard to imagine this from outside the spectrum. Imagine if everywhere was actually a movie set — a location designed intentionally a certain way for a certain reason. There’s lighting, style, texture, energy, etc.

Then, the actors are dressed specifically to match the tone. Muted colors or bright, matching or contrasting, symbolic in one way or another — patterns appropriate to the architecture, time period or set by the lighting — cuts and styles seeming to originate from the era, blending seamlessly to create an illusion for the audience… All things the clothing designer considers when dressing the actors for full effect.

I’m not acting. This is me, for real. I’m becoming the most appropriate part of the scenery as I expect it to be. The Scientist too, to a lesser extent. His wardrobe has been cultivated to be timeless, unique and memorable — much like his personality. He’s not concerned with fitting in to the background so much as being himself, inspiring his own mood for the day, and matching the tone I’m setting.

I attribute my fashion obsession to many factors. I was singled out for my clothing in elementary school. I wasn’t allowed to wear dresses because of how I boyishly sat and played. I wore hand-me-downs from my brother’s closet and was forced into oversized, stiff tees. My body developed early, well ahead of my peers. I was obsessed with fitting in with others, with everyone, through my first 25 years. I felt insecure and detached and craved fitting in. I’m bored over the blandness and unoriginality with what the stores are offering. I need to inspire my own mood to want to socialize. Everything I do stems from an intentional choice.

To feel remotely comfortable, I need to look like I belong, by my own standard. I am a chameleon with thousands of skins.

Photo by Ekaterina Grosheva on Unsplash

On Being Different, Extra

I never want to be the center of attention. I take very few pictures and no videos of myself because I’m ironically not very attached to the way I look. I check the mirror once or twice a day, and not always before I leave the house in the morning. I always wanted to be more than just a pretty face and took a lot of umbrage whenever anyone said “it’s a good thing you’re pretty.” Beauty is irrelevant. It’s luck of the genetic draw. I’d love to blend in, to appear less striking, to be taken seriously as a mind not a face.

But since I intentionally choose my outfits based on an endless wardrobe, I end up standing out. Grudgingly.

It’s gotten me into embarrassing situations in the past. Moments or evenings I’ll regret forever because I overplayed my outfit. I’ve lost friends over it. I’ve ruined days being too…me.

Fabrics, Brands, Patterns, and Prints

I won’t wear leather or fur, because it seems silly and cruel to me in a world where the fakes have become as good if not better than the reals.

I don’t wear realistic animal prints for much the same reason, but I never pass up a green zebra print or a colorful feather pattern if it’s right.

Keep your name brands. I don’t want to pay exorbitant prices to be a walking billboard for a corporation. The brands that most people pay the most money for seem less valuable to me, lower quality, poorer construction. For that matter, I’m happily thrifty and incorporate vintage pieces often.

I don’t have too many fabrics I won’t wear, but I know the textures I don’t find comfortable. By feel, not by name. I have a few items in my closet that I love the look of, but can’t wear because of fit or feel — and eventually I’ll weed them out when I’m tired of trying to love them and the disappointment has faded.

The Scientist has an encyclopedic knowledge of fabrics, patterning, and construction. He can touch a fabric or see it on a hanger and identify the percentage of the blend. He also dabbles in sewing and clothing design. He wears a lot of birds, flowers, and natural textures. His retirement dream is to design a clothing line.

Colors

The Scientist and I are both able to see more colors than the average person. Although tetrachromacy is typically considered a female trait, we both identified many more color variants than the average when tested. It likely makes us even more attentive and discerning.

I know what goes together. For me. It would be impossible for me to verbalize these rules. They vary by decade or inspiration, cut and mood, all sorts of variables.

I nearly never wear red, blush, or beige. I firmly believe navy and purple can go with anything if you’re using them correctly. There are 100+ versions of each color. Anything can be a neutral. I love using contrasting colors from the wheel, watching for pastel/bright/primary/jewel combinations, and switching up options seasonally. I tend to be a year or two ahead of where the trends are, but I attribute this more to my growing boredom, not because of some insider fashion knowledge.

The Scientist is adept at monochromatics, moreso than I. I’ve never met anyone who can wear shades of red that work together. He also finds ways to match neighboring colors on the color wheel- something I never attempt but something I find so compelling. Usually he prefers blue or lavender.

Photo by Darling Arias on Unsplash

Head to Toe Fit and Style

I know it when I’m comfortable, which varies greatly based on my anxiety. Despite a fairly static body type, my anxiety will dictate how comfortable I feel in tighter fitting clothing or revealing more skin day to day. Sometimes I really need to show off this or that to feel feminine. Sometimes I need to cover up entirely in billowing fabrics.

My choice is predictive, though. The Scientist can predict an upcoming meltdown if I’ve chosen one of a few “I give up” pieces of clothing in combination. Usually, this is an ill-fitting black shirt with brightly colored rainbow leggings and something that just doesn’t match the rest.

(He’s helped me see my patterns in so many wonderful ways. I highly recommend finding an empathetic neurodivergent partner, if you have an empathetic neurodivergent mind.)

I prefer sneakers — Vans or Cons — which the Scientist has explained is because of my metatarsal arch, which requires a flatter, more protected surface. I toe-walk (common with neurodivergence), and my weight leans toward the outstep of my foot, not the ball. I’m working on fixing my gait and soon I’ll wear corrective braces. It’s not all bad though — I have highly developed musculature in my toes (finger-toes, I call them), and I have pointy, dainty dancer feet for them being size 10 hairless mammoths.

The Scientist is more predictable in fit and style. He likes a tighter fitting pant, a looser fitting button-down, and a seasonally appropriate sleeve. A suit whenever it is appropriate. No pants in the summer, shorts. Always socks. Palladium boots. Tommy Bahama casuals.

Mood

How do I want to feel today? What am I trying to convey? How can I inspire myself to create or focus or embody the nuanced part of myself I deem important right now? Is there a fashion era that will assist me in getting there? A color palette? An attitude? For as much as I want my style to match the environment, I’m also thinking how my style can alter my mood for the moment.

Feeling sluggish? Definitely wear the career casuals associated with office work. Feeling relaxed and free? The artsy throws and pastels will do nicely. Let me layer up the knits for the fun of fall. Break out linen for the freedom of summer nights.

Photo by Atikh Bana on Unsplash

Memory

Recently, I realized how my outfits function as a touchstone for memory. I don’t know why — perhaps because of the care with which I select them, their uniqueness or weighted importance, or just seeing them in my periphery each day.

Always, automatically, what I wore is a shortcut to the coded file. “Remember that day?” you might ask. Do I? I remember, I was wearing — oh the weather — the scenery — the people — the conversations — and then yes, I do remember that day.

I didn’t realize it was so important to me until the Scientist and I became nostalgic about our own experiences together. “Remember when…” he’d ask. “What was I wearing?” was always my reply. Knowing I have a tendency to encode memories differently, he never took offense when I didn’t remember right away. He can usually recount at least some of the outfit on the day in question and the memory floods back.

The regularity with which I asked him about my clothing drew my attention to my memory’s predilection. And because he and I spend a lot of time together, and because he dresses deliberately as well, his outfits have helped me encode experiences I otherwise would have forgotten. He’s my favorite sight in every scene.

I have trouble remembering the stuff people usually remember , in favor of things people typically don’t notice. I don’t remember the plot of the movie, or who was at the birthday, or what year the party was — my memory might be the strange thought I had when I walked in the room, the fact that I’d seen that poster before, that I got stuck in traffic on the way, or the faded color of the carpeting. I’m me everywhere, and my brain never stops analyzing and formulating — it has no sense for what to prioritize in memory, and certainly no accurate sense of day or year.

But…I can remember…I am this outfit on this day at this time for this reason — so Easter 2019 — the sage green, knee-length, modest dress with delicate lavender flowers that I wore under the lilac denim jacket I’d bought for the occasion with my olive green high-top Vans— meeting the Scientist’s extended family, wearing spring colors and wanting to be me, a casual-yet-romantic-inspired me — and I’ll never forget that day. It’s the intentionality with which it was chosen, the specificity of the clothing, that jogs the day back.

An Unbelievable but Totally True Addendum

The Scientist and I met on a dating site a few years ago. Actually, I’d seen him many times in various contexts before, but didn’t put together that all of these cute guys I’d seen and been too shy to talk to over the years were the same guy. He was the guy that tutored at the library where I worked years earlier. He was the guitarist in that concert I’d been drooling over before that. He was the guy on Myspace that all the girls somehow struck up conversations with before that.

He was the 8-year-old sort-of-Goth kid in the Marilyn Manson shirt that I met at the picnic when I was the 12-year-old wearing the multi-colored striped baby tee and gray parachute pants with butterfly clips who played violin. We’d exchanged a few words. We’d gone our separate ways. We realized it decades later based on the clothing we each wore and what we remembered of the other.

It’s sort of like an autistic fairy tale, wouldn’t you say?

What do your clothes say about you?

I’d never expect my structure to fit around anyone else. And I know that many neurodivergent people consider color, texture, etc in choosing outfits. What else matters about your clothes? Are they communicating something? Are they standing you out or fading you in? Please tell me your autistic expression — I would love to know more.

Photo by Sarah Brown on Unsplash

About the Series

I am neurodivergent. Neurodivergent is more appropriate terminology than autistic, a term which derives from the Greek word autos meaning self, a term intended to imply isolation from social interaction. While the definition of autism has expanded over time, I feel it is more flawed and divisive than not (as labels typically are). While I do still refer to myself as autistic on occasion, I’m much more likely to label my notable traits as autistic, as in “this skill or tendency sets me apart”, and to describe myself generally as divergent.

My partner, also neurodivergent, feels similarly. We were both diagnosed later in life, in our mid-late 20s, after running the gauntlet of other health and human service concerns and crossing the eventual “must be autism if it isn’t these other things” finish line. I wouldn’t wish either of our journeys toward diagnosis for anyone, years rife with stress, mislabeling, depression, psychosis, serious medical ailments, and general social othering. The medical and psychiatric communities have already begun to recognize neurodivergence earlier, and with more sincere gender blindness, to provide individuals with the tools, resources, and assistance they require. To “make it” in our society as a person who falls many standard deviations outside the expected average on related scales relies on an individualized approach to education and healthcare. (A much larger conversation for another day.)

Sincerely,

Sunshine

Of Www.sunshineandthescientist.com

Creator of Kid Lit Motivates: a fledgling business on Long Island providing customized educational resources from a unique perspective of education

Author of Maddie Steiner, Fashion Designer

What about Maddie?

The author explains it all.

MADDIE STEINER, FASHION DESIGNER is the first picture book for Kid Lit Motivates, but hopefully not the last. After a weekend of networking with young readers and parents, I realized there were things I wanted to explain that won’t be obvious in the first read and also some background about the work itself.

Since publishing the book, my best friend/partner/love has joined me in the KLM mission -(Sunshine and the Scientist) – and while I tend to refer to the book as mine, it is now ours, and we consider “I” and “we” interchangeable here.

Cover image of Maddie

The Plot

Maddie is a can-do girl on a mission to make a new outfit for an Art-Show-Style-Party (whatever that is), and she’s never done that before. She RSVP’s to the party, but makes a few mistakes in the response. Then she dreams up a gown she’d love to wear, researches how to design, then gets to work shopping, sketching, sewing, and adding embellishments. The story ends with her arrival at her friend’s house, wearing her crafty, new dress and excited to get partying.

“It’s the book I would have loved when I was a kid!” 

I hear this often. Thank you, same here. I wanted books I could read over and over again, with complicated illustrations, pictures in pictures, jokes within jokes. 

Spoiler alert: It is not ABOUT fashion design.

First, to dispel the notion: this book will not teach your child how to sew. There are no patterns included in the back of the book and no direct instructions for budding fashion designers.. (We are currently creating these as an extension workbook, due to the popular demand and the curiosity the notion seems to instill. It likely won’t be available before the end of the year, and was not part of the original idea.) MADDIE STEINER, FASHION DESIGNER was never intended to be a sewing manual for kids – but this is the primary criticism I receive., so it’s worth noting.

Maddie checking the mail.

Inspired by Real Life

The book was inspired by a particular client I worked with when I was doing in-home work with autistic children. At 10-years-old, L had been diagnosed with a learning disability and was struggling academically and socially. She had difficulty initiating choices, and at the gates of puberty, was starting to recede into her cell phone, her dark bedroom, and stormy, unpredictable moods. She loved fashion – wanting to look put together all the time – and it became clear early that she was a perfectionist, and one that struggled to accept average, but imperfect grades. Test stress suffocated her. As I got to know L., I realized she was becoming obsessive about boys and friends, and she had difficulty maintaining a conversation that wasn’t centered around her. L might have a learning disability, but it seemed clear to me that she was autistic.

(‘Female’ presentation of autism is generally much different than the more male-type presentations, which is not to say that boys won’t have the more ‘female’ traits or vice versa. There are generalizations, but every child should be treated with the respect of individuality. I can talk about autism and our culture for hours, so I won’t dive further in to that here.)

Necessity, as always, is the Mother of Invention

In any case, it was clear that my responsibility to L was not primarily academic support, as initially suspected. I had the opportunity to impart the social and emotional knowledge she was understandably lacking, the things that they don’t usually teach in school. Self-awareness and self-acceptance were primary goals. We found a lot of success after about 6 months in emotion identification, coping, and social awareness. We even made progress away from isolation and obsession. The hardest thing to work through was the desire to be perfect.

Perhaps it was so hard to approach perfectionism, in part, because it was something I struggled with until recently myself.

I spent hours in various children’s libraries around my county, searching for a picture book that might help me show, rather than tell, this particular lesson. Yes, L., was 12, and capable of reading middle grade chapter books – but the picture book format was a lot more accessible in an hour-long session, and the images could be more impactful than the words for a more youtube-centric generation. I believed, even before Kid Lit Motivates was born, that a picture book could open the door to any conversation. Despite endless searching, I was disappointed at the selection.

Maddie focused on JENGA.

We should encourage ALL girls, all kids, to think, whether or not they love STEM.

L.’s interests were narrow – and within those interests I could find nothing available that addressed her needs or represented her struggle. The thinking/planning books were all math- and science-based. There were books geared to much younger kids about making friends, but no picture books with the awkward struggle of the pre-teen. There were books where children finished projects, even books about overcoming perfectionism, but none that showed HOW to do it, only how to FEEL as you do it. And the only books available regarding fashion were vapid and useless – can’t a girl love clothes and still learn to think?

I shudder when I remember one Barbie book that was recommended to me by a librarian- Ken comes over to fetch Barbie for a date, and Barbie keeps him waiting on the porch while she quite literally gets lost in the wide expansive wonderland of her own closet. She returns much, much later, after an entire fashion show of dress and shoe options, to find him asleep on the porch. Not to worry, Ken says something degrading about how that’s the best he can expect from her, and off they go on a giggling, happy date. Book over. Jaw on the floor. To me, disgraceful. Is this really the best we can do for girls and boys?

I write rhythmic, rhyming bits to cope.

MADDIE, quite literally, began as a poem I wrote to cope with the absolute despair I felt in the search. Rooms full of craft supplies and I could not find the way to explain, model, or demonstrate to L how to get a project started without worrying about the way it came out. We tried a lot of craft projects together, any hobby she expressed the slightest interest in, but she couldn’t take pride in any of them or do anything twice, because she couldn’t accept the reality of a learning curve. Perfection or bust.

The poem stayed with me, reworking itself in my mind, line by line, at odd moments in time. It did nothing to help L. and eventually our time together ended. It was a year or so after our sessions terminated that I hired an illustrator to make my vision a reality. I had a poem that had a tight rhyming lilt, that felt like a folk song but for a modern audience. In my mind, I saw it unfolding like a mix between Looney Tunes-style animation, referential meta humor, and details that felt like real life.

Self-Publishing Amateur Style

I confess I was very directive with the illustrator, who was phenomenally skilled, patient and kind. He added the stuffed bear in homage to a beloved teacher (the bear appears on nearly every page). and he understood the pop culture nods and winks I hoped to add. He is solely responsible for every one of Maddie’s fun tees, for the Indiana Jones and Bob Ross reference images (and others), and for the humor inside the humor.

On the first edition of the cover, he didn’t put his name on the work, and I felt quite badly about it. I still do. It hadn’t occurred to me that I should tell him to add his name, demand it, implore him to take credit – I thought artists signed their work when they wanted to stand by it, and since I’d described each page in great detail, perhaps he just didn’t want to be associated with my project. When he reworked the cover for me (to add the giant picture of Maddie, as I realized was standard for picture books), I insisted he take credit. (If you ever read this, Aaron, thank you so much for everything. My desire to see my vision through was so intense that it wasn’t the collaboration it could have been. I was new to the industry, I’m very grateful for the character you added to her character, and I sincerely apologize.)

The interaction we had was only the first step of my lacking confidence in Maddie, there would be many other stumbles along the way.

Maddie pricks her finger.

Criticism is Understandable

MADDIE STEINER, FASHION DESIGNER is not like other picture books. This was – sort of – the intention.

The text is too advanced for the picture book industry. Despite being an acceptable number of words and pages, the content and vocabulary level far outpaces the typical picture book audience.

Since the book was meant to be aimed at a preteen audience, it’s an honest, if unfounded, criticism. It wasn’t meant to be read by or to early readers. It was meant as an anchor activity to begin any number of difficult or tricky conversations, while modeling what it is to have a dream, set a goal, learn a skill, and accept the outcome.

Where are the Teens?

Teens and preteens are practically nonexistent in picture books. Mostly, the books involve human or animal characters ranging in age from baby to age 10 or so, and full-grown adults. Occasionally a teen sibling character appears as an aside.

Teachers know that picture books are excellent ways of jumping in to topics – so why can’t we use them with a slightly older crowd?

Maddie isn’t clearly identified as a teenager, but there are indications she is one. She eats takeout from containers and goes shopping for supplies alone. She’s got a full-sized desk in her bedroom and a lab coat in her closet. (She likes science after all. Science AND clothing.) At one point in the story she works so much that she falls asleep in a mess of scraps, paint, and glue. It’s real. She’s a young teen.

Why don’t we have representations of teenagers in picture books? Moreso, why don’t we show characters who have “unskilled”, “stepping-stone” jobs, while going to school – you know, like the ones real teens have? Cashiers, servers, retail store workers, babysitters, facepainters, the list is endless.

Where are the picture book characters who show what being a teen is like, emotionally, socially, psychologically? We model adulthood for children without even blinking- careers, parenthood, etc. But the teenage years are like a silent, shameful era we’d rather kids not be exposed to. Despite the fact that they will one day be teenagers with changing bodies, growing hearts, and questioning minds, we only show them children, adults, and the occasional teenage savant.

If we ever hope to ease the teenage transition, and limit dangerous rebellion, isolation, and attitude, we should probably demonstrate to kids in positive ways what will be expected of them. And embrace teens for what they are, not deny they’re growing up until they’ve already grown.

It Isn’t Just One Book

Maddie was meant to be a relatable girl, a real girl, with hobbies, interests, skills and struggles, a range of emotion and experience. I hoped to use it as an anchor to talk about socializing, texting, learning a new hobby, setting a goal with a defined deadline, and working hard to the finish. The posters in Maddie’s room tell us to “Tri, Trryy, Try Again,” to take “Caution: Mind at Work”. She may say she’s okay but her face tells us otherwise. She may say it was easy, but we can see the challenge. Just like reality.

I hoped it was something that could be read again and again, where illustrative Easter eggs might catch the eye on the second or third read, where the rhythm of the text and the notebook illustration might inspire future repetitions.

It occurred to me much later that its a book that exists within an entire world of possibility – a world where reality is represented and celebrated for being perfectly imperfect, awkward and emotional, exhausting and energizing.

I have big dreams for this book, and several stories of a similar, yet different ilk, demanding illustration, waiting to come to life. I’ve been learning the art form myself, counting down my hours of illustration practice, slowly but surely, because I believe all things are possible, and because I wouldn’t want to force my ideas on another artist ever again.

Maddie shopping and shocked at the inventory.

So Who and What is it for?

It’s a book about a teenager, written for a preteen, hoping to be included in the canon of younger readers who are looking for the next, best thing. It exists at face value as a simple story about a girl and her quest to make a dress, and then as a model for actual, awkward, uncomfortable, amazing adolescence.

It’s a book that shows how to set a goal, and see it through, despite the odds and imperfections. It can also suit nicely as an anchor for many other conversations and subjects, many of which I have since created worksheets and activities for which are available for free and for sale on the Kid Lit Motivates TeachersPayTeachers Store site.

The Wrap-Up

It’s a book I’m intensely proud of, despite the odd reactions it evokes. I stand by it and I hope that my vision for it, for our future work, and for the Kid Lit Motivates mission, is clear.

To purchase MADDIE STEINER, FASHION DESIGNER and support Kid Lit Motivates – please click here.

To receive free downloadable resources to use with MADDIE or without, or to purchase workbook packs, please click here.

If you’re interested in connecting about this or anything Kid Lit Motivates has to offer, please contact us at kidlitmotivates@gmail.com, or head to our contact page and fill out the form.

Thank you for your interest in Kid Lit Motivates.