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

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

Monday, November 13, 2017

I'm gonna talk about pain now

Under most circumstances where people would expect me to report pain, I display a really high pain tolerance, or threshold, or probably both. I've mentioned a couple times that I went hiking on a freshly broken foot, and that I was fine. When I got attacked by an ~800lb Old Spot pig, I had a cantaloupe sided lump on my thigh, and I also went on rides at the Fryeburg fair that afternoon. (I got mauled on a Tuesday. I rode my bike to school that Friday. There was no pain medication involved.)

Then there are other kinds of pain where I ... don't have that kind of tolerance.

The key is how my sensory processing issues are involved in the pain. (I'm not certain that it's possible for my sensory processing to be uninvolved in any sensory experience I have, ever, and it's probably related to the high pain threshold at the least.)

If my sensory processing issues (and I'm OK calling these ones issues, they hurt) are the cause, my pain tolerance is super low. Camera flash? Comparable to getting hit in the face, because I kind of am getting hit in the face. Ow.

If it's an injury pain, I've got a high pain tolerance. I'll probably notice that I did something, because I was presumably aware when the injury happened. (It took a while to figure out that my leg had an issue after I passed out in the pool because I was not conscious when I hit my leg on the edge of the pool.)

If it's an illness pain, there's a significant chance that I won't notice. It's not unusual for me to figure out that I'm sick based on a more behavioral cue. Why am I shaking? Why am I shivering? Why can't I talk? I just threw up so I guess I'm sick.

Three different sources of discomfort. Three different reactions. 

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.

Wednesday, November 1, 2017

"Speaking" to academia #ASDay

I wear many metaphorical hats. I'm a teacher. I'm a published poet. I'm a disability studies scholar, affiliated with a university but not for disability studies. I'm a graduate student in neuroscience. I'm an Autistic advocate, and not only a self-advocate (advocating for myself is often harder than the general stuff.) I'm a blogger.

Always, I am all of these things (and a bunch of other things). Sometimes, I get the opportunity to combine them. I've been blogging for GradHacker, part of Inside Higher Ed, since the start of the calendar year. That's for writing that's relevant to graduate students, or about graduate school.

Even though I know disabled graduate students exist, and disabled professors exist, and anyone teaching will eventually have disabled students, I've worried before every disability-related pitch I've made to them. Is it a topic that anyone outside disability communities would care about? Do they have enough background to understand the issue even if they care? Will the editors go for it, even if the audience would find the post useful?

It's far easier to talk about something like my discussions with my union, where my example "just happens" to be about disability. I know graduate assistants unions and contracts are widely relevant. I know "read your contract!" is good advice for any graduate assistant. One of the reasons I give is about knowing where I go for my accommodations, but it's not the only one I give. There were all of three disability posts on GradHacker before I started blogging for them, so far as I can tell. Breaking that pattern was a bit nerve-wracking. (Three of the posts I have up for them are explicitly about disability, and all but one at least references it. Seems like a lot, but I said I could bring a disability perspective when I applied and they took me so they kind of asked for it? That's what I tell myself, anyways.)

The disability series I'm writing for GradHacker now didn't start out as a series at all. It started with a post I'd had the idea for, and then suddenly couldn't not write. That's how a lot of my writing happens, actually. The disability stories I'd heard over the course of my time at university, either from professors or from other students, scare me. A way of explaining the pattern came to me, and I had a post. I was about to post it here, and then I realized that the GradHacker audience was the one that really needed to see it. They're reasonably likely to be teaching college later, and they might be doing so now! That became of the most commented-on pieces on GradHacker, because I "spoke" up. (Maybe the most commented on. Definitely the most commented on since I started blogging for GradHacker, almost by a factor of three.)

Now it's going to be at least four posts: one about disability stories, one about using AAC as a student, an upcoming one about the accommodation talk as a student (written, but not scheduled to post until late this month), and one an editor suggested to me about disclosure as a disabled teacher.

I'm talking to academia, or the future of academia, about things that directly affect me as an Autistic graduate student. Some people might even be listening. I hope so.

Thursday, October 19, 2017

This semester, I'm taking a class about Augmentative and Alternative Communication (AAC). There are videos. I do something like liveblogging while watching them, just into Open Office. Now the results are here.

So here's the video:

And here's what I wrote while I watched it:

Video defines AAC as “the use of customized methods and devices to supplement a person's ability to communicate”

[In class we described low tech as limited messages, but pen and paper or board and marker

HI backup systems are important, variety

“Anyone who is unable to speak, or whose speech is difficult to understand.”
[Intermittently this is me, but I actually do sometimes switch over before speech is totally gone, at the point where AAC is more efficient rather than strictly required.]


“Sometimes we find ourselves on the floor or under a desk because that's where somebody wants to be” as a way of noting that there are no behavioral prerequisites for AAC use.
(That's actually concerning that I'm the example here)
(Who didn't get access to communication because of doing the thing I do in grad school?)

Use all the methods. Don't eliminate what's working.
(There are a very few people who can read my body language.)

Least dangerous assumption.

8-12 months in assessment is a while. I get why, I just hope stuff is being tried during that time.

What does the individual want to do? Family and such help and guess if the person can't answer but we want to ask the person. Look at daily life.

Information about prior devices gets lost. So do the prior devices.

Vocabulary to actually have a conversation, rather than only “I want X” is kind of needed to have a conversation.
Is that what the more than just requesting was about? (Also a video on that topic.)

Thursday, October 5, 2017

Diagnostic arbitrariness and NO, not everyone is "somewhere on the spectrum"

["Somewhere on the spectrum" here is "somewhere on the autism spectrum," or variants on the theme of claiming everyone to be a little bit autistic.]

Autism diagnosis can be pretty arbitrary. There isn't a blood test. There are genes that are associated with an increased probability of being autistic, but that's not the same thing as a gene "for autism" or a genetic test. We don't really ask about the internal experience of being autistic, either. Instead, we basically have a behavioral diagnosis: if you do X, Q, and W, but not A or B, then we're going to conclude that autism is the proper label. C makes us wonder if you might really have some other thing, but we won't rule out autism if you don't meet the rest of the criteria for that other thing. (Or, we shouldn't.)

Since autistic behavior is a subset of normal human behavior, this gets messy. Autistic people might tend to stim in characteristic ways, but everybody stims, and sometimes we're just getting in extra trouble for a way of stimming that is actually pretty common. Think about fiddling with a pen or pencil as an example of us getting in extra trouble for something most people will sometimes do.

That means edge problems. Where, exactly, are we putting the line between two neurotypes? The location of the line changes when we change the diagnostic criteria - that's always a big topic of discussion around DSM changes. Telling people who seem to be near an edge that they are definitely on one side or the other of that edge, based purely on external behavior, will lead to mistakes. Some of these mistakes will be harmful.

Any categorization scheme dealing with people has to deal with the reality that no two people are exactly alike. Not every single person is easy to classify. Our nervous systems didn't read the textbooks while wiring themselves! There are people who fit equally well (or equally poorly) in several categories. The problem there is with the textbooks, and the inevitable incompleteness of categorization systems. MASSIVE harm is done when people treat the problem of not fitting the classification system as being with us instead.

Oh, and let's not pretend that everyone diagnosing autism (or any other neurotype) actually understands the neurotypes they're diagnosing. Plus there's problems from people taking advantage of their positions of power, or otherwise acting in bad faith. Sometimes, things are intentionally done wrong.

Now, all of these issues are real. I've seen people use some combination of these issues to argue that everyone is somewhere on the spectrum, and that's where the problem is. "Some people are hard to classify" doesn't mean "everyone is hard to classify" or "everyone is somewhere on the spectrum for neurotype Y." On a similar note, "The person who diagnosed me incorrectly with X didn't understand X or my actual neurotype of Y" is different from "X doesn't really exist" or "Everyone is really Y." In each of those cases, the first statement is true. The second and third statements are not, and actually look a lot like diagnostic arbitrariness themselves. (They can certainly hurt people in similar ways to diagnostic arbitrariness around the edges of definitions.)