“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

Other Ramblings…