Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Thursday, November 2, 2017

Dear Medical Professionals, I'm not a sick or injured NT

This got prompted by Autism Women's Network asking what we wish medical professionals knew.  If you're seeing this shortly after it posts, they're probably still looking for feedback, in case you have thoughts of your own.

The gist of my thoughts is: dear medical professionals, I'm not a sick or injured NT. Overwhelmingly, I've had medical professionals assume that if I'm not presenting the way they've been taught people with a given issue present, that means I'm not having that problem. This has led to them missing broken bones. So, the first thing I want to talk about is pain.

  • No, I can't rate my pain on a scale of 1-10 for you in any useful way. The only pain scale I've ever found that made any kind of sense to me put hiking on a freshly broken foot at a 2 or a 3. I am reasonably certain that hiking on a freshly broken foot would not be a 2 or a 3 for an abled neurotypical human, but it was for me.
  • Yes, I understand that you need a pain scale number for insurance. Figure out what the problem is or take a reasonable guess based on everything except my reported pain level, then you take a guess for what it should be. I really, really can't. It is a waste of both of our times to try to get a number from me.
  • If you think or were taught that a person with a given injury or condition "can't" do something, think about why. Is it a structural issue, where a joint literally won't take the weight, or is it supposed to hurt too much, or is it supposed to take too much energy? If it's pain, there's a very good chance I can do it anyways. See again: hiking on a freshly broken foot. Yes, I'm still annoyed at the doctor who concluded the image that looked like a month-old broken foot (because it was a month-old broken foot!) couldn't be a month-old broken foot because I'd been walking on it.
Somewhat related is hypermobility and hypermobility related injuries. It's related because hypermobility often comes with chronic pain. My pain sense isn't reliable enough to tell you if I have hypermobility related chronic pain or not. (Oops.) It also comes with an increased likelihood of dislocating and subluxing things, and often a ridiculous range of motion. (Said range of motion could get reduced by injuries. It happens.) Related to my hypermobility:

  • "Normal" range of motion and my normal range of motion are two different things. Don't assume I'm fine because my range of motion is strictly greater than this "normal" range of motion, and realize that things are very wrong if that's all I've got.
  • Things you think a person needs to be really loose to do? I can probably still do them while very tense. A friend of mine who weighs over 250 pounds recently wound up standing on my back in an attempt to break up the tension there. It just barely worked. I still had my normal flexibility like that. Don't assume my muscles aren't all knotted up just because I'm still flexible.
  • If I dislocate something, I can probably put it back into the joint myself, and I probably didn't tear anything. That means I'm going to recover from it way faster than someone without hypermobility. However, it may still hurt, and it was still a dislocation. It especially will still hurt if my joint sat wrong for a while. (Also, my hips will hurt every time, right away. I recover really fast, but yes I need a moment.)
And of course, communication. I'm Autistic. I don't communicate like a neurotypical person would.
  • I am going to be precise. If your recap is even slightly off, I will correct you. Considering that y'all have managed to forget things like, "Alyssa isn't being sedated" despite being reminded many times, and y'all have also manged to misunderstand "I don't trust my pain sense to tell me if it's broken or not" as "Not broken because the patient can walk," I'm going to keep doing this. Cope. Or even thank me because I'm keeping you from making medical errors!
  •  Written communication is better for me than spoken communication. I can be much more precise in writing. If you give me the questions that are going to be asked ahead of time (or believe that I have some idea - I do!) I can type up answers and get them to you. That way, you don't need to worry that you've tripped a script in the initial description of whatever my issue is.
  • I have a lot of scripts. "Fine thanks and you?" is a script. Unless this is my annual physical, it is also inaccurate.
  • Phones are bad. Let me book online, or via email, or in person before I leave the prior appointment. Do not demand I book over the phone. I can't.


  1. I'm an autistic physician with chronic pain. . . and I can't use a pain scale. I either have too much imagination or not enough.

    I can tell if my pain is better or worse than other pain I have experienced, from hangnail to broken bones, and better or worse than a previous time. And I can tell what it stops me from doing.

    But I can't give it a number based on a scale from none to the worst imaginable. And no, the faces just make the problem worse. I don't hurt like a crying cartoon.

  2. Even the 1-10 of "doesn't impact my daily routine" to "can't do things, too pain" (which, by the way, is a far more grounded-in-actual-extrapolable-example sort of scale that I think we shoukd use generally) doesn't seem like it would help to assess the severity of injuries there. Not to make an ironic statement, but ouch.
    ...okay, totally yes to make an ironic statement but also seriously that made me wince.


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