“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…