“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.

“Has your autism gotten worse?”

This question was posed by a well-meaning, but under-informed physical therapist as she bobbed my neck back and forth in her hands like an idle basketball player waiting to pass the ball. I could feel the tension increasing with every question and dismissive comment, each one suggesting that the reason I had pain was because I just “didn’t understand pain”.

I would counter, that she doesn’t understand autism, and that the single sentence above confirms my suspicion.

“It doesn’t get better or worse, it’s who I am. I’ve been this way my whole life.”

I was too frustrated to come up with a witty or more illuminating response, such as to ask her if the pandemic had made her eye color more intense, or if pain would cause a blind person to be more blind.

She kept repeating that she “had a book” for me to read, one that would benefit my pain, because she’d studied a lot about pain, and everyone who read the book always said that it helped them. I told her that my pain isn’t what bothers me as much as my reduced strength and coordination. I also added that I have studied pain, and the nervous system, and various other cross-related topics, especially as they apply to neurodivergent folks, and found that a lot of the sage wisdom applied to pain stems from a neurotypical experience.

“Pain is pain, having autism doesn’t matter. When you have pain for as long as you have had it, your body becomes more sensitive to pain, even when it shouldn’t.”

She kept using the phrase “having autism”, as if autism was something I’d caught in a public restroom. As if it was an affliction. A disease. A manageable condition that I’d allow to flare out of control. She touched one of the inflamed areas on my spine, and I winced.

“See? That’s hyperalgesia. I just barely touched you.”

I confirmed that I knew what she was saying, although touching an inflamed area and getting a pain response is not a valid diagnostic method for hyperalgesia. She tapped me on the shoulder to “verify” that it shouldn’t have hurt.

I was in tears while I talked because I was being patronized by this person, this caregiver, who was supposed to be helping work the knots out of my muscles, but was instead, raising my stress level through her ignorance of how an autistic person’s nervous system differs from “normal”. I experience a strong emotional response to being talked to like a child, or being told that the reason I have muscle atrophy is because I don’t “understand my ouchies”.

What should have been a productive, soft-tissue massage was rendered useless by the tension that accompanies overwhelm. She was the stimulus overwhelming me, but was oblivious, and just kept suggesting that I read the magic book. After the third time that she said it, I balled up my fist and hit the massage table.

“I’ve already told you that I have no problem with reading, but it’s not my pain I’m here for. My neck pain is manageable, it’s the muscle control I’m trying to improve. Also, I have to pee.”

She stopped touching my neck, and went to go get the book. I went to the restroom, and tried to relax. When I got back to the room, the “book” was on the massage table. It was a photocopied, twelve-page handout in 10pt font. With pictures. It was basically a less charming “Pain for Dummies”.

To humor her, I read the entire thing in a few minutes. It was written at a fourth grade level, with lots of analogies like “your nerves are like a highway”. It described, in incredibly simplistic terms, pain response, elevated sensitivity, and other basic concepts that someone with chronic pain is already familiar with. I learned nothing new. It was not helpful. The entire session was not helpful, and left me drained for the remainder of the day.

My particular autistic presentation comes with enhanced sensory response. I can smell, hear, taste, and feel things that my friends cannot. When I am stressed, all of those senses just get stronger, and I become more easily overwhelmed. Once I’m overwhelmed, all I can do is cry, which, unfortunately, feeds back into people treating my like a child. It sucks.

The woman treating me that day was not my normal therapist, and I’ll likely never see her again. I toyed with the idea of presenting her with a similarly simplistic booklet on autism, but didn’t feel that the energy:reward ratio was in my favor.

However, the more times I run into folks who think they know what autism is, but clearly don’t, the more it seems like I should make the Octopus Dilemma a real thing. Perhaps that therapist might read it, and realize that it does matter if her patients are autistic. – K

A year ago, today…

I always use baby talk with my cat, because she is incredibly skittish, and anything close to conversational tone causes her to hide under the bed.

This isn’t an article about my views on the events of January 6th, 2021, since, at the time it happened, I had no idea what was going on. My January 6th of 2021 was spent bundled up with the cat and the Xbox controller, as it had been a particularly bad pain day for me, and playing Minecraft is my form of self-medication.

I only heard anything about the attack on the capitol building when I called my mom for her daily jollying session. She was still in the hospital on her third round of chemo at that point, and when I asked her how she was feeling, she said she was worried about what she was seeing on TV. I don’t have TV (I have a television, I just don’t have any service…), so I assumed it was more of the same “steal the vote” shenanigans, (Which, technically, it was…) so I told her not to stress, and distracted her with humor.

When I finally had a chance to check on the news later that night, I understood why she was frightened, but I also wasn’t in the least surprised, since I’d predicted there would be a coup attempt back in early 2020. You don’t need to be a political science major to see the pattern forming, especially when it’s being broadcast in real time on a daily basis.

Something I did get to witness, from this particular microcosm of Central California, was what was going through the brainspace of the people who thought knocking down the barriers around a federal building was going to be like an episode of Punk’d. There was genuine confusion as to why people would be arrested. These were the same people who proudly displayed “thin blue line” flags on their cars during the BLM protests. I could say that everyone can see the hypocricy, but it’s not true. They really think that they’re “the good guys”, and that they’re fighting the good fight.

The human mind doesn’t like to change. It doesn’t like to accept new information if it doesn’t mesh with what it’s already learned before. (Regardless of whether or not the information it learned before was true or accurate.) If the information is too different, the brain will react defensively, even to the point of aggression. (Which is why your crazy uncle Chuck isn’t invited to family gatherings anymore.) This is true for everyone, and training your brain to not be a crotchety, stubborn, ass takes a lot more effort than most people are willing to expend.

Marketing experts know this, which is why 99% of politics is marketing. When those people marched on the capitol, they carried a brand logo with them. They displayed it on their hats, shirts, cars, and flags. If a group of people showed up at your house covered in Snickers logos, the obsession would be obvious, and you’d be quick to label them “The Candy Bar Cult”. The strange part about all of this is that the ones covered in the logos don’t seem to realize that they are in a cult at all. That’s how powerful the marketing is.

Human minds can be changed in huge ways, if the changes are small, and similar enough to the information the brain already contains:

“I want to eat healthy.”

“Fiber is healthy.”

“Peanuts contain fiber.”

“Snickers contain peanuts.”

“Snickers are healthy.”

“People who don’t eat Snickers are unhealthy.”

“People who say that Snickers is unhealthy are sheep who have been fooled by the anti-Snickers media.”

“We need to make people eat Snickers, or they’ll die.”

“People who refuse to eat Snickers, or try to prevent others from eating Snickers are trying to kill people, and should be killed first.”

This is a big part of why I don’t watch TV. I know I’m not immune to marketing, even though I know how to guard against it. However, an easy step we can all take to prevent ourselves from becoming human billboards is to realize that we don’t need the product as much as it needs us. If we have the presence of mind to walk away from the feed, it becomes easier to see the sales pitch, and then we learn to recognize it for what it is. – K

Other Ramblings…