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

Wednesday, November 13, 2019

November 20, 2019 #ATChat: User Perspectives

I'll be moderating #ATChat, a Twitter Chat on Assistive Technology, on November 20. The chat is 8-9pm EST, and the topic is going to be user perspectives. If seeing the questions ahead of time is helpful for you, they are below. Please wait to tweet your responses until the relevant question is asked, though!

Some people here (like me!) may play multiple roles: AT user, professional, or researcher. If this describes you, feel free to answer from all your roles! #

Q1: Why would you want to include user perspectives? Why is this important?

Q2: What do you use user perspectives for currently? If you use AT yourself, what have you shared your perspectives for?

Q3: What might you want to use user perspectives for, that you currently don’t? If you use AT yourself, where would you like your perspective included better? #ATChat

Q4: How do you include the perspectives, goals, and desires of the users you work with? Or, how are your perspectives as an AT user included? #ATChat

Q5: Where do you look for additional user perspectives, or where do you share your perspective as an AT user?   #ATChat

Q6: What do you think about engagement with social media content by AT users, like blogs, twitter feeds, or transcripts from relevant Twitter chats?  #ATChat
Engagement could include reading and interacting with users and user communities on topics of interest, sharing our content, and other things you might think of. #ATChat

Q7: What work by AT users would you recommend to other participants? (Self-promotion is OK here, for those of us who use AT!)  #ATChat

Friday, November 1, 2019

Literally Speaking About Not-Always-Speaking on Autistics Speaking Day

This Autistics Speaking Day, I presented at the American EducationalStudies Association conference on my paper, “Am I the Curriculum?

Given the origin of Autistics Speaking Day as a response to a Communication Shutdown event, telling neurotypicals to get off social media for the day to simulate and empathise with autistic communication difficulties, I think giving this literal speech on Autistics Speaking Day was fitting.

Autistic people often use tools like social media to support our communication. I believe that our doing so should be considered as the communication support it is, just as augmentative and alternative communication (AAC) researchers do for people they recognize as needing AAC. (I also think speaking autistic people should be recognized as needing AAC. Heck, AAC for everyone. Let's not depend on speech language pathologists specifically, or outsiders in general, to recognize communication difficulties that AAC could help with.)

I use social media to support my communication. That's literally what I'm doing with my blog. That's literally what Autistics Speaking Day is. The Internet is, so often, our lifeline. I am no exception to my statement that speaking autistic people can benefit from AAC, or that social media is part of this.

So speaking about my experience as an AAC user, as someone who often has to use tools other than speech (like social media, but not only social media) to communicate, on Autistics Speaking Day, seems fitting. Advocating for AAC for everyone, which I've said before and will say again, on Autistics Speaking Day, seems fitting.

And speaking back to the awkwardness of entering professional spaces as an autistic AAC user, to advocate for these changes, to advocate for increased access to AAC for us? Yes, that's part of Autistics Speaking Day too.

Sunday, October 13, 2019

Pronoun Information as a Design Problem

Trans people exist. People we are working with in a variety of contexts won't always guess our genders or pronouns correctly. Sometimes, guessing leads to misgendering people, which isn't good. Several ways of dealing with this have been proposed and sometimes used. None of them are perfect. When people are working in good faith, we can think of this as a design problem: solutions aren't static, we can improve them, and we can come up with new options. (When people are intentionally being anti-trans, handling that is a different question.)

Current solutions include:
  • Adding pronouns to typical introduction circles
  • Pronoun pins/pronouns on name tags
  • Defaulting to gender-neutral pronouns unless and until you have specific information about the person you're talking about.
These solutions all have advantages and disadvantages. Considering them one at a time might help us think about better ways of doing this. (And no, we don't abandon the current solutions while we're trying to think of better ones. That just leaves us with no solutions. I'm keeping my they/them pins and noting my pronouns in introduction circles whether or not they were listed as part of what we "should" be saying about ourselves, thank you very much.)

So, first: Adding pronouns to typical introduction circles. The advantages include:
  • Introduction circles already exist.
  • In theory, we can get everyone's pronouns this way, thereby avoiding misgendering people by guessing incorrectly. 
The disadvantages include:
  • Introduction circles were already a clunky, awkward, unnatural front-loading cram of personal information. Adding pronouns to them does not fix any of ways introduction circles were already awkward, and most people will still forget most of what they "learned" from this cram session.
  • If pronouns are a required part of the introduction, people who aren't out may need to choose between lying and coming out. That's not cool.
  • Only including pronouns in these introduction circles when you think there's a trans person in the room draws attention to whoever it is you think is trans (not cool), as well as to the gender of everyone in the room.
  • Only including pronouns in these introduction circles when you think there's a trans person in the room can lead to not including pronouns when there's an out trans person who would be misgendered without a chance to state their pronouns.
Making pronouns an optional part of all introduction circles might help address some of these disadvantages. It won't do anything about the fact that these introduction circles were awkward to begin with.

Second: Pronoun pins/pronouns on name tags. The advantages include:
  • Name tags are already in common use at certain kinds of events.
  • If the person is present, so is a visible reminder of their pronouns.
The disadvantages include:
  • If there's no name tag, the pronoun pin could be just about anywhere. Where do we look for it?
  • If pronoun pins/pronouns on nametags are required, people who aren't out may need to choose between lying and coming out. 
  • If this is done in a computer system without a fill in the blank option, people may be forced to lie because their actual pronouns aren't on the list of options.
  • When the person isn't present and you need to talk about them, there's no visible reminder. 
  • Blind people may not be able to use this system effectively, so there is an access issue.
Making pronouns an optional part of name tags when name tags are in use can address some of these issues. So can letting people put whatever pronouns they want on their name tags, not limited by a list organizers came up with.

Third: Defaulting to gender-neutral pronouns unless and until you have specific information about the person you're talking about. The advantages include:
  • Not gendering people who prefer not to be gendered.
The disadvantages include:
  • Not all languages have gender-neutral pronouns.
  • Languages that have gender-neutral pronouns may not have a single set of gender-neutral pronouns.
  • Gender-neutral pronouns are also used to de-gender binary trans people, and that's not OK. 
I don't really have any suggestions for tweaking this option.

One idea I have, which I haven't seen discussed as a way of introducing pronouns before (though it could have been -- I obviously don't see everything), is the third person bio. It's a context-dependent option, in that it won't always make sense to include third person bios for people, but some conferences already have presenter bios. So do some meetings. By writing these introductions in third person, we aren't announcing "my pronouns are X," but we are choosing pronouns (or choosing to avoid pronouns.)

As an example, many presenters for AAC in the Cloud wrote introductions in third person. (A few used "I." I used "they.") People generally weren't leading into their presentations with their pronouns. I might have (I don't remember), but it wasn't generally a thing. We could get good information about how to talk about people, though: Dr. Kathy Howery starts with her title, indicating we should use it, and uses she/her pronouns in her introduction. I just use my first name (Alyssa), indicating I don't need an honorific (if you want to use one, it's Mx. until I finish my PhD, but I don't need one) and they/them pronouns in mine. Ms. Helland tells me that "Ms. Lastname" is the right format to use for her, and she uses she/her pronouns. And no, I wasn't the only presenter to use they/them pronouns in my bio.

The advantages of this option include:
  • The information about our pronoun preferences is there -- avoiding pronouns is also a choice.
  • This can hold additional information about us, including additional information about how to refer to us!
  • Bios can be referred back to in a way introduction circles can't be.
  • It's a comparatively implicit cue, which may feel more natural for people.
The disadvantages of this option include:
  • Ok, where are we putting all these third person bios anyways? (For conferences and meetings that have programs, the program makes sense, but that's not everywhere. The site where I teach math has them posted to the online classroom on the first day of class, and also on the teachers page.)
  • There can still be a choice between coming out, lying, and avoiding pronouns for trans people who aren't out. I don't think any of those are ideal.
  • Do people actually read these, even when they're present? I'm not certain.

Are any of these perfect solutions? Obviously not. They're imperfect and context-dependent. Besides, I'm an engineer. I don't actually believe in perfect solutions -- just better ones, and continued improvement. So, you know, keep thinking?

Friday, September 6, 2019

Dimensionality Reduction

Dimensionality reduction is something I deal with in math, statistics, and engineering. It comes up in my research. The idea is that when data is complicated, because there are a lot of different kinds of information in it, we can make our lives easier by considering fewer variables. Sometimes we pick from the variables that are already there. Sometimes we smush several variables together and create new ones out of the results, then pick from those. Either way, it can be useful to reduce the number of variables, the number of dimensions, that we need to deal with in a complicated pile of data.

However, we lose information when we do so. Like everything else engineers need to do, there are trade-offs involved, and we need to recognize that. Dimensionality reduction means simplification, which can make large amounts of information easier to deal with. But over-simplification makes information less useful.

Using disability and access needs as an example:

I use a much more complicated thought process to decide what I can and can't do on any given day than people who know me might use to guess what I might and might not be able to do. This includes deciding when I'm just done for the day.

My major professor works with me in an environment (our lab) where my losing speech is most likely due to sensory triggers. If I lose speech due to sensory triggers, I'm leaving the environment where it happened. She knows that if I can't talk I'm probably going home. This is an appropriate simplification for the context.

However, when I was a graduate student in math, I most frequently lost speech in classes where I was a student because I'd already taught that day and I'd essentially run out of mouth-words. Nothing bad was happening, and nothing bad was going to happen because I stuck around and kept doing math without speech. My classmates and professors knew that if I couldn't talk, I was probably going to grab a whiteboard marker and start writing on the board instead. This was an appropriate simplification for the context.

Those are both examples of appropriate dimensionality reduction. In the lab, "can speak" vs. "arrived non-speaking" vs. "lost speech in the lab" was a 3-possibility variable that made a decent proxy for how I was feeling and how well I could work. In the math classroom, whether or not I can speak wasn't an important variable. 

Ignoring the variable of whether or not I can speak in the lab would mean ignoring useful information. Using the variable of whether or not I can speak in the math classroom might mislead people into finding patterns that aren't really there. So it's important to choose the right variables to focus on!

And yes, this applies to functioning levels. In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That's always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it's useless. Talking about low, medium, or high support needs isn't going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can't shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.

Monday, September 2, 2019

Disability Microfiction

For Cassandra Khaw's birthday, she asked that people do microfiction requests. So, I said I'd do disability microfiction (basically a story, premise, or piece of a story that fits in a single tweet) for people who replied with a word.

This is me saving the fiction I wrote, and putting it in one place for blog followers who don't necessarily use Twitter.

Prompt: Cape

Prompt: Echo

Prompt: Exuberant

Prompt: Horses

Prompt: Triskaidekaphobia

Prompt: Ecstatic

Prompt: Kiss

Prompt: Dorsiflexion

Prompt: Strong Independent Person

Prompt: Crackle

Friday, August 30, 2019

That AAC on a plane story

I want to talk about a thread that's going viral.

My problems are not with Rachel, but I do have problems.

Problem the first:

Rachel doesn't think this kid's been exposed to much in the way of communication therapy. I don't know about therapy with a focus on speech, but given the father's confusion and how fast the kid responded to a low-tech communication board, I'm quite sure he hadn't been exposed to AAC before.

That's a problem. Yes, thank you for introducing communication supports. As an Autistic AAC user doing AAC work, I am appalled and horrified that people are reliant on a chance encounter with an SLP on a plane in order to be introduced to AAC. Communication access is a human right. I'm glad Rachel got seated next to this father/son pair, and I'm glad she introduced AAC. She did the right things in a situation that should never have happened. There should have been communication access years ago.

I'm happy for this family, that they have AAC now. I'm sad for this family, that this is what it took. A chance meeting with an SLP on a plane.

And you know what else concerns me?

People are sharing this like it's a heartwarming story. It's a terrifying story. Imagine how many doctors and therapists failed this family, that communication access rested on this chance encounter. Imagine how many people still don't have communication access.

This is, in fact, an important story. It's an illustration of just how dire the situation is for autistic people and our families trying to access the human right of communication. We are being "served" by people who don't know to consider communication board, who don't know to consider AAC. We are being "served" by people who see a non-speaking person who grabs things and assumes the way to go is to try to control the "behavior" rather than to provide other ways to communicate that they want those things. And we are being "served" by people who presume that non-speaking means non-thinking.

And no, I don't mean people who presume that non-speaking means intellectual disability. Non-speaking people with intellectual disabilities can use communication supports. I mean people who assume there are no thoughts worth trying to communicate, that the primary "service" needed is control over the person. It's a problem whether or not a non-speaking person actually has an intellectual disability.

So, share away. Just remember it's a story about years of communication denied and systemic problems. It's a story about a kid who didn't get to have his communication honored until he was about 10, who had his attempts at communication treated as "challenging behaviors" instead of attempts at communicating sans speech. It's a story about a chance encounter, and it's a story about everything that had to go wrong for that chance encounter to matter. This is no better than the high school robotics team making a prosthetic for a kid whose insurance denied it: good for the team, but remember why it was needed.

Share this story as an illustration of what's wrong in our system, not just as a story of one person who did a good thing.

Tuesday, July 2, 2019

Pretending/insisting teens (as a group) aren't sexual hurts asexual teens too

It seems pretty common for adults to refuse to acknowledge that teens, as a group, can be sexual beings. (Or to insist that even if they are, they shouldn't be and must therefore pretend not to be.) Abstinence only "health" classes? "Wait until marriage"? Every time education based on those ideas gets studied, we find it doesn't work. The exact things they're supposedly about avoiding (any result of teen sexuality, that is) wind up being the exact things that happen.

People who pay attention to the results of various approaches to sexual education have a good idea of how badly this goes for heterosexual teens. Sometimes we know how badly this goes for gay, lesbian, bi, pan, or trans teens.

What about the teens who actually don't have the urges that the educators simultaneously insist we must have, but also that we must resist?

I'm asexual. (I'm also bi/panromantic depending on the definitions of the moment, and I'm nonbinary. Queer is a useful umbrella term here.) I don't have the urge to do any sexual stuff. Does that mean the adults who insist teens be non-sexual are safe specifically for me?

Nope! You see, it's not actually respect for my ability to make my own decisions if you're only respecting my ability to make decisions you approve of. Assuming/insisting that I'm making the decisions you like for completely different reasons than I really am is also an issue. One, it's ignoring my agency. Two, you're going to predict my later decisions incorrectly and make bad decisions about what would work for me later. You're ignoring the decisions I'm actually making in favor or projecting different decisions onto me. Among other things, all this makes your advice about abstinence and waiting really irrelevant. I'm not "waiting", because that would mean I planned to do this stuff eventually. 

So: I'm not doing sexual things. I'm maybe saying "wait until marriage" because that's a somewhat socially acceptable way of saying "nope not doing the thing" but then the assumptions go to: 1) marriage is a thing I want (Maybe? Dunno) and 2) once married I'm going to do those things (NOPE). I look for advice on how to handle situations where folks my age are doing sexual things in my general vicinity and I'm not super comfortable. The advice I find isn't useful, because my reasons for not participating aren't moral. Being a repulsed asexual gives me totally different problems with sexual situations than being abstinent for religious reasons.

So, was advice from people who assumed I, as a teen, must have wanted to be sexual but shouldn't act on it useful? Nope. It was too covered in incorrect assumptions and disrespect for anyone who actually did want to be sexual (which was, in their minds, all teens.) Insistence that someone's internal thoughts and perceptions must be a certain way is neither helpful nor safe, whether or not you agree with their decisions.

Advice from people who assumed I, as a teen, must have wanted to be sexual but was under some sort of mistaken impression that I shouldn't for moral or religious reasons? Also neither useful nor particularly safe. Seriously, people who have religious reasons to prefer to wait aren't going to benefit from having their religious beliefs called nonsense. If they're trying to tell other people to wait or interfering with other people's decisions based on personal religious beliefs, that's an issue, but that's not the kind of advice I'm talking about here. And it didn't even apply to me anyways, because religion wasn't my reasoning for not having sex either! Don't assume someone's in that category, or decide they should be.

"I don't want to" isn't the same thing as "I think I shouldn't." Conflating them makes life harder for people who think either way.