“Am I in the right place?”

If you are looking for the website of “The Wig Lady”, you are in the right place.

If you are looking for the website of “The Writer/Artist”, you are in the right place.

If you are looking for the website of “The Weirdo from Oakhurst who Ate Strawberry Yogurt Directly off the Carpet in 3rd Grade”…

…you are in the right place. (I didn’t want to waste food, okay?)

So, really the question you should be asking is, “How are all of these people the SAME person?” The answer to that is a little harder to explain, but if you are interested in getting a peek into how a brain like mine works, read on.

Although I have met and talked with countless people throughout my public career, you’ve probably never actually met me. You’ve met Kaede.

This is Kaede, and she really needs a sandwich.

Kaede is my coping mechanism for dealing with stressful social situations. “high functioning” (please don’t use that phrase…) autistic women are often difficult to spot, because we’ve perfected the art of camouflage, or “masking”, to fit in. Kaede is pretty damn seamless by this point, but maintaining her for long periods of time is both emotionally and physically exhausting. It suppresses my immune system, and I become more prone to injury. (And I’m already a mega-klutz to begin with.)

So why would I do this to myself? Because I have to if I want to maintain any amount of success in my public work. As a teacher, as a celebrity, as a “normal human”, I have to try to fit in.

Now, before you take offense to the thought of me being “fake” when you met me at a convention, sit your ass down for a big bowl of education first. Masking isn’t lying. In fact, one aspect of my autism is the fact that I’m too honest or too literal. I’ve never been “fake nice” to anyone I’ve met in my entire life. I couldn’t do it even if I wanted to. But Kaede allows me to do some basic things I normally can’t do, like:

  • Maintain eye contact. (Sort of, I’m actually looking directly below your right eye, or at the bridge of your nose.)
  • Talk to strangers in an audible tone of voice.
  • Receive/give hugs.
  • Have my picture taken.

These simple interactions are something I’ve had to work on for years, and for most of the people I know, even outside of work, this is the “normal” they’ve come to expect. But when I get too tired, my mask slips, and then people think I’m totally whack-a-doodle-doo.

“You don’t seem autistic.”

Really? Because I don’t seem like the media-popular version of an autistic person you’ve come to expect? A young boy, bobbing back and forth in his chair, twirling his hair around a finger, staring at the floor, repeating the same phrase over and over? I agree, that’s not me. The boobs would be the first clue, I’d think.

The publicly familiar version of people on the spectrum focuses mostly on a very specific presentation of symptoms, and resources and information for those of us with the less visible symptoms, especially women, are scarce. Most will be misdiagnosed, or just go through life with this feeling of “weirdness” and no idea what it means or why.

For me, it’s like everything finally clicked into place. My weirdness score has been high my whole life, and as more “oddities” started to manifest, I couldn’t possibly think they might be related to one another. It didn’t make me feel special, it made me feel strange. Like I had an eclectic list of useless superpowers.

  • “Steel Trap” photographic memory, going all the way back to age 2.
  • Ridiculously strong senses of hearing, smell, taste, and touch.
  • Highly auto-didactic: both with knowledge and movement

Then the accompanying list of difficulties..

  • Sound hurts and sometimes enrages me. I constantly have to wear earplugs when I’m in public. (Which make my ears bleed from my latex allergy.)
  • I have to wear sunglasses in public, even when it’s not bright outside. My eyes feel scared without them. (I don’t have a better way to describe that.)
  • Certain smells that others find pleasant or completely undetectable cause pain, or make me vomit.
  • I can taste things other people around me can’t, which has made them think I’m picky, or being “dramatic”, but really, carbonated water makes my tongue feel like it’s being electrocuted.
  • There are some materials/fabrics/textures that I can’t touch. If I touch them on accident, I yank my hand back in disgust.
  • I experience motion sickness in places most people don’t.
  • I don’t process drugs normally, so anesthesia and painkillers are always a crap shoot.

Then there’s just the “weird” stuff…

  • I perceive some letter sounds as “bright” or “dark”.
  • If I see numbers on the clock or odometer in sequential (12:34), repeating (55555) or palindromic order (140041) I have to make someone else “witness” it.
  • I give everything a voice and a name. This includes inanimate objects, animals, food, body parts, whatever. I regularly carry on conversations where I voice multiple participants.
  • When I remember something, I see my exact location in the exact scene, and will use my hands to “reach” for other people’s positions in the scene as if I’ve actually been transported through time and space.
  • I create sounds for motions that normally wouldn’t have them, and repeat the sound every time I do the motion. (For those of you who are familiar with my wig work, you may recognize this as “scoop, scoop, scoop” or “tap, tap, tap”… I have hundreds more.)
  • I dream in full color, full sound, and often lucidly. I also remember all of my dreams, including songs I have written while asleep.

And finally, the things that make it difficult to fit in…

I have zero tolerance for dishonest behavior. That might sound like a good thing at first, until you review your day and think about how many times you told a “white lie” or did something even a little shady at work. If you were working for me, and you lied about something like taking someone else’s lunch, or spreading a rumor about another coworker, I’d straight up fire you on the spot. That’s not an “if”, that is something I’ve done multiple times. When the shoe is on the other foot, and I’ve encountered a manager or boss who lied, I had to quit ASAP because continuing to work there made me physically ill. (I quit a 65k a year job because of this very reason.)

I don’t understand, and can’t duplicate superficial behavior. Seriously. I’m really, really smart, and I understand a lot of psychological concepts and social phenomena, but I have never been able to understand the “why” or “how” of the shallow. As a side effect, I can’t make small talk, and that leads people to believe that I just don’t want to talk to them. From the outside, I’m perceived as cold or shy, when in reality, I just have no interest in talking about things I have no interest in. Unfortunately, most people don’t feel comfortable talking about anything deeper than a kiddie pool, so I’m sitting by myself at the deep end.

Because I don’t forget anything, I end up having the exact same conversation hundreds or THOUSANDS of times. It’s the Groundhog Day effect on a small scale. I’m the only one who remembers the conversation, but the other person doesn’t, and sometimes, it’s a topic that I really don’t want to discuss another time. (Like a recounting of abuse or another painful memory.) They don’t understand why I’m agitated or short, and it takes a tremendous amount of energy to hold in the screaming.

I can’t multitask, but I also can’t stop working. Some people have mistakenly described me as “creative”, and only one person has ever caught just how wrong that is. (Thank you, April.) I don’t create because I want to express myself, I create because I need to keep busy, and the world doesn’t keep up with this need. I literally have to make things that never existed before just to keep up with my brain. I can’t sleep until I’m exhausted, and even then, my dreams keep me busy too.

I have to have rules, order, and routines. I’m very good at planning and organizing complicated events, but I get visibly enraged when someone tries to alter the course mid-stream. From the outside, this is seen as intractability or being a “control freak”, but internally, I’m upset because I’ve put a lot of careful time, thought, and energy into creating an interconnecting pattern, and changing one aspect could cause others to collapse.

I don’t “get” social media. I understand, from a business standpoint, that keeping an open dialog with fans and customers is important, but I can’t understand why anyone would possibly care about anything I have to say outside of updating them about events or new products. I don’t feel like I’m important, and I don’t like attention, so the whole concept of posting things just for the sake of posting is insanely narcissistic. So why am I bothering to post this? Well, that brings us to the meat of the issue.

“It might help someone else.”

When I first began to see the pieces finally clicking into place, it was because I discovered another author who experiences many of the same things I do. Then I found another. Then a bunch more. All of them were successful, intelligent, well-spoken women (at least in printed form), who had the same “weirdness”.

So maybe I can be another link in the chain to someone else, and maybe by reading about my experiences, and how I’ve learned to cope and manage, they’ll find some useful tools to help them in their own journey.

And for everyone else, I’ll have plenty of poop jokes.

Dodged a Freight Train, Hit by a Truck

My mother has Leukemia. We discovered this, very abruptly, at one o’clock in the afternoon on Christmas Eve. The nurse told my dad to take her to the nearest hospital immediately so they could begin chemotherapy, and an hour later, she was one of the many people waiting on a stretcher for the very limited medical staff available due to the massive influx of Covid19 patients. She didn’t get a bed until much later on Christmas Day.

She’s in the same hospital I was for my spinal surgery a year ago.

Her particular variety is Acute Myeloid Leukemia (AML) which is fast-moving. At her age, she has a less than 10% chance of making it out of the hospital at all. My dad is the only one allowed to visit her, and he can only do that for fours hours maximum per day. My parents’ house is over an hour away from the hospital, so he’s driving two round trips every day. We offered to cover an extended stay hotel room, but he doesn’t want to risk Covid exposure by adding a new location to his routine. He wouldn’t be able to visit her at all if he gets sick, because her immune system is basically non-existent.

I don’t talk much about my mother, because if you’ve met me, you’ve met a younger version of my mom. She’s likely neurodivergent, but has never sought formal diagnosis, which is probably just as well, because at her age, she’s more likely to be dismissed as a “crazy old woman” rather than be taken seriously.

Nobody has ever taken her seriously, and her mask was that of a clown for the longest time. When she started to get too tired to keep it up, people thought she was just no fun any more. They called her anti-social. They made fun of her for not being able to make chit-chat with strangers at the grocery stores, or responding bluntly to people trying to sell her things. These are familiar, normal autistic behaviors. She was being authentic.

“Where’s the old Jeannine?”

She’s right there, you’ve just never met her.

Since I can’t visit my mom in the hospital, I’m doing the only thing I can. I’m using my mask to cheer her up, making her laugh until she pees her hospital gown, and talking to her like she’s not crazy. Because she’s not crazy.

She says she gets confused sometimes, and that she feels like she’s losing her mind. I tell her that the world is a confusing place, and that if she loses her mind, maybe it’ll bump into mine somewhere. – K

Translating an Unwritten Rulebook

Back at the beginning of the year, while in the early recovery from my spinal surgery, I had to force myself to take a break from writing. I could barely sit up at the time, and leaning over a keyboard for two weeks just didn’t seem wise. I listened to my doctor, and my partner, and “took it easy” for as long as I could stand it. The result was a backlog of two stories in my head at once: The Bucket Lord, and Becoming Ulysses.

I thought having two impatient beasts in my head at the same time was bad. Now there are six. Six different first scenes are flickering, waiting for me to press play. But I can’t press play, because I’ve been told it’s against “the rules”.

As an autistic, I have an almost compulsive need to find and follow rules. It’s one of the ways I to try to navigate what seems like an otherwise chaotic and arbitrary existence. (Notice I said “seems like” instead of “is”… I’m clearly talking to a neurotypical crowd here.) By default, there is “definitely, definitely, definitely no logic to human behavior”, (Thank you, Bjork.) so I spend a lot of time lurking and studying “normal” humans to try to figure out what I should be doing to blend in.

That being said, I spend a lot of time reading up on publishing guidelines, following literary agents and editors, absorbing as much information and “dos and don’ts” as I can to try to unravel the mysterious “query letter” conundrum. As I’ve touched on before, there is no “right way” to craft this elusive, and all-important document. Every literary agent has different tastes, preferences, and protocols. Each learned different “rules” for what is and isn’t good… and none of them seem to agree on what they are.

That’s why I have six books on pause. One piece of advice many published authors post is to “write the next book” while waiting to hear back on the previous one. So I did that, and at my speed, I’d written seven books by the time the last rejection for the first one came in.

Then another agent said, “when I see that a writer has ten unsigned books in one year, that’s a big pass from me.” I wrote eight books in a year, and only eight because I had part of my spine removed and replaced. So now, I feel like I’ve “broken the rules”. I’m supposed to go slowly. I’m not supposed to let the stories out of my head, or people will think I’m a hack.

Now, this is where a neurotypical person would say something like, “who cares what that person said? Go at your own pace.” I know they’d feel like that made sense to them, but to me, I’m thinking, “What if that’s the right rule? What if the other person was wrong?”

There are six books paused in my head. A traffic jam of honking, impatient commuters trying to get through the toll booth that is my hand, and out onto the open highway of blank pages. The longer I wait, the more will build up, until there are too many to count. All because of one traffic cone, which very well may have been left there by a teenage prankster, has told me it isn’t safe to let them through.

Autism isn’t insanity, it’s uncertainty. It’s constantly questioning everything you do because you’re terrified that you’re always doing it wrong, and nobody seems to know where the instruction manual is. – K

Other Ramblings…