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

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.

Thursday, November 22, 2018

Alyssa Reads Neurotechnology and Direct Brain Communication, Part 2

Still reading this book:
Farisco, M., & Evers, K. (Eds.). (2016). Neurotechnology and direct brain communication: New insights and responsibilities concerning speechless but communicative subjects. Routledge.
Part 1 was here, with the introduction and first chapter.

Now reading chapter 2:
Demetriou, A., Spanoudis, G., & Shayer, M. (2016). Mapping mind-brain development. In Farisco, M., & Evers, K. (Eds.) Neurotechnology and Direct Brain Communication: New insights and responsibilities concerning speechless but communicative subjects, 21-39.

The chapter starts off with a theory for how the mind is set up. (It's a theory I've seen before.) Thought is broadly considered as categorical, spatial, quantitative, causal, or social. Our perceptual systems are generally set up in ways that support these kinds of thought and connection-making. There's the idea that abstraction notes similarities between things, alignment actually sticks stuff together by those similarities, and then cognizance stores the stuck together stuff as its own thing. It seems like a reasonable way of thinking about how stuff works. Then they start talking about how it develops, with episodic representation, then mental representation, then rule-based representation, and then principle-based representation. 

And I'm pretty sure they're talking about how everything develops in neurotypical people, though they don't specify that. I think it would be better if people talking about neurotypical psychology and neurology explicitly said they were doing so, rather than just saying they were talking about people. For example, there's discussion of visual circuits, and aphantasiacs don't do the visual things the same way y'all think people do visual stuff. And kind of like language development people tend to assume we start at one word and build up, while some people start at phrases and break down, then remix, then build up on occasions where remixing isn't enough.

Or there's two main circuits that do verbal working memory type things, one for rehearsal (getting ready to say a thing, I guess) and one for “nonarticulatory maintenance of phonological information” (p. 29). What does this mean for AAC users? Or even neurotypicals on social media or otherwise using typed language for real-time communication? What does this mean for the students in my online classroom at AoPS? (And no, I can neither assume that my students are neurotypical nor can I assume that they're neurodivergent. I have no idea.) I wish I knew what their citation was for these two verbal working memory networks. Rehearsal is supposed to be left-lateralized (in righties or in everyone? They didn't say!) premotor-parietal, for which it would make sense to me that we'd just get premotor areas related to whatever body part is being used to communicate instead of related to the mouth, but use a similar circuit regardless of communication medium. Verbal maintenance is supposed to be bilateral, anterior-prefrontal to inferior parietal.

I wonder how the rehearsal areas might activate when using, say, a P300 speller. Would activation depend on whether the current stimulus is for the desired letter or not? How does the slower speed of typing affect the activation of and demands on working memory? Is this even the most relevant working memory circuit for P300 use? (I know working memory is relevant, but it could be a visual working memory circuit we need to care about, or one of the verbal ones, or all the parts that are in either, or only the parts that are in both. I dunno!)

Oh, come on, now we get to see theory of mind come up, where a mentalizing network is suggested to be needed to serve awareness of mental states, and that this (with alerting and orienting attention?) is key to consciousness. If I never see theory of mind theory again, it will be too soon. (I say shortly after turning in revisions to a chapter that examined the effects of of theory of mind on interpretation of autistic autobiographical narratives, which required me to deal with quite a bit of theory of mind nonsense. Why do I do this to myself?) There's apparently been research into the neuroanatomical (phrenological?) and neurochemical bases of this theory of mind thing, too. Because they cite
Abu-Akel, A., & Shamay-Tsoory, S. (2011). Neuroanatomical and neurochemical bases of theory of mind. Neuropsychologia, 49(11), 2971-2984. 
Which is apparently a well-cited article, per my looking it up. Why.

How is it “obvious” that mentalizing ability and executive control would be served by the same systems? Is it only obvious that these use the same systems in neurotypicals? Or is it therefore paradoxical to be decent at guessing how others would feel in a given situation, while also having pretty terrible executive functioning. Am I a paradox? I think it'd be interesting to be a paradox.

If salience/shifting networks are already in place in some form before birth, like Hoff et al seems to suggest, and salience networks function differently between autistic people and neurotypical people, is this one of the places we can point to neurodevelopmental differences even before birth? (I'm kind of betting it is, even if it's not one we've checked yet. There are a lot of things we don't know yet about brain networks.) Hoff et al is:
Hoff, G. E., Van Den Heuvel, M., Benders, M. J., Kersbergen, K. J., & de Vries, L. S. (2013). On development of functional brain connectivity in the young brain. Frontiers in human neuroscience, 7, 650.
I run into an autism/connectivity paper on the first page when trying to find Hoff, so bookmarking that too:
Belmonte, M. K., Allen, G., Beckel-Mitchener, A., Boulanger, L. M., Carper, R. A., & Webb, S. J. (2004). Autism and abnormal development of brain connectivity. Journal of Neuroscience, 24(42), 9228-9231.
The introduction of that paper already annoys me with the prevention/remediation nonsense, though I appreciate how it called autism research disconnected. I kind of already knew that whenever I deal with autism-related literature, I need to grab what useful bits I can while wading through messes.  

Or even the ages of transitions between levels of abstraction in thought. There's some range in typical development, but that doesn't mean that neurodivergent people will fall inside those ranges. (And we may well build up the ability to do things at one level that y'all wouldn't have, because the "next" level grants it easily and you get there by the time you need it.)

Oh, and while we can point to networks that are active in certain functions, there's no cognitive functions whose corresponding networks are totally known, even in the totally neurotypical. No, I don't think I run all the same networks for everything that a neurotypical person does. There's already some autism-related evidence that I don't, and there's starting to be some aphantasia-related evidence that I don't, too. Please, please specify when you're talking about neurotypical networks and structures. 

Part 3 is/will be here.