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 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.

Wednesday, November 14, 2018

Alyssa Reads Neurotechnology and Direct Brain Communication: Part 1

I got Neurotechnology and Direct Brain Communication out of my university library. (I love libraries.) I got it because I do research related to brain-computer interfaces in my graduate program, and it seemed like a directly relevant book that is in my library. I didn't realize when I took it out that it'd be as interdisciplinary as it was, but, hey, added bonus. I like mixing my fields up a bit.

Farisco, M., & Evers, K. (Eds.). (2016). Neurotechnology and direct brain communication: New insights and responsibilities concerning speechless but communicative subjects. Routledge.

Anyways. I'm reading, have some reactions from their introduction:

I think the mention of how brain and mind relate, as being philosophically considered the same thing, substantially different, or somewhere in between, is a nice touch, as is the admission that science tends towards taking the two to be pretty much the same. Maybe I'll get to see more discussion related to that in later chapters? It'd be cool.

One of my classmates told me that when she did research related to "motor imagery" brain computer interfaces, while most participants did start by imagining a certain motion, they didn't necessarily keep imagining that same motion as they kept using the system. The signal kept coming from the same place, but what they were doing to make that signal changed. I think that says something about localization.

They ask if it's possible to interpret what someone is thinking directly from brain signals. Thinking as someone who does work in brain computer interfaces, I don't know if that might someday be possible, but what we have right now is nowhere near that. It's a few characters of text per minute, when things work well, which isn't always  the case. (As opposed to the 60+ words per minute I type with my hands, or the over a hundred words per minute of typical conversational speech.)

And yay paying attention to the assumptions used in neurotechnology. I like it when people recognize that technologies aren't conceptually neutral.

I wonder what age range they're taking as infants, and how they're determining that infants don't understand language. Because the coordinated movements involved in speaking are an issue, and receptive language tends to be way ahead of expressive language for quite a bit of child development. That is, people understand more than they can say. And I spoke at six months. It's true that speaking at six months is unusual, but if we're doing the "interrogate assumptions" thing, we should interrogate this assumption too. Especially when it's being used to question the use of the word "communication" when applied to babies. And especially when the first chapter goes on to discuss neurological responses that suggest hearing infants do recognize spoken language.

And now the first chapter:
Lagercrantz, H. & Padilla, N. (2016). The emergence of consciousness: from foetal to newborn life. In Farisco, M., & Evers, K (Eds.) Neurotechnology and Direct Brain Communication (pp. 21-34). Routledge.

The authors ask what it's like to be a baby. I don't know what it's like to be a baby -- I don't remember anything from when I was that young, and even though I was talking a bit at six months, I don't think my parents asked me what it was like to be a baby. Maybe if I meet another six month old who talks, I'll ask them what it's like to be a baby.

Oh no. Oh no. Early identification of "risk" for autism and then early intervention. In a world that used a model more like the Foundation for Divergent Minds one, I'd be totally cool with early identification, and early actions to support people. But I know what model is really used in early intervention, and it increases our risk of PTSD. So, no. Here's another assumption I'd like to see challenged, thank you.

Discussion of whether dreaming during REM sleep is a conscious or unconscious state is interesting. However, I do want to question the assumption that insight and self-reflection are absent during dreams. Lucid dreaming (dreaming while aware that it's a dream) is a thing, and both insight and self-reflecting are totally possible in that state.

EEG and NIRS are the same technologies we tend to use in our lab, because they're portable. It's interesting to see them come up in infant studies for similar reasons.

I do wonder how they're deciding certain neuronal connections are required for consciousness, as opposed to being required in order to communicate consciousness to outsiders. Those aren't the same thing. See also, "I heard it all" or "I understood it all" from people who were in comas, as well as from non-speaking autistic folks who get access to communication later.

"Resting" neural activity is definitely a thing. There are always, always neurons firing in alive people. That's why, when we do neuroimaging studies, there's often a comparison between activity at rest and activity during whatever task we're asking people to do. It's because things are still happening when we're resting. Autonomic breathing control, for example, is still a thing. So is sensory processing. I wonder what my rest state looks like compared to that of my neurotypical classmates.

"However, dreaming is tightly linked to the ability to imagine things visually, which is less likely to occur in the foetus and extremely preterm infant." (p. 12).
Wait, really? People with minds eyes confuse me. My imagination doesn't get to plug into the monitor anytime other than while I'm asleep. I don't have the ability to imagine things visually when awake, and I can't make an extra layer of intentionally imagining more things visually while dreaming, either. But I do dream, and often in color. My other senses often work in dreams too -- things like taste and touch. I would never have come up with an association between dreaming and visual imagination on my own, even though "do you dream?" is one of the first questions I'm asked when I tell people I'm aphantasiac and explain what that means.

There are some interesting sensory findings here. Apparently typical newborns already have some capacity for facial recognition, though their visual acuity isn't great. (I wonder if they're better at recognizing faces than I am. And at what point developmental/congenital prosopagnosia can be detected, if typical newborns already have some facial recognition. See Meltzoff, A. N. & Moore, M. K. 1977. Imitation of facial and manual gestures by human neonates. Science, 198, 75-8; Farroni, T. Chiarelli, A. M., Lloyd-Fox, S., Massaccesi, S., Merla, A., Di Gangi, V., Mattarello, T., Faraguna, D., & Johnson, M. H. 2013. Infant cortex responds to other humans from shortly after birth. Sci Rep, 3. and stuff citing them for references if I ever try to look more closely at this, I guess?)

I think it's pretty cool that infants can start acquiring another language if someone reads and tells them stories in that other language. It makes sense, considering how many kids are bilingual from a young age due to immersion in multiple languages. 

"Even the preterm infant ex utero may open its eyes and establish a minimal eye contact with its mother and show other signs of conciousness like cortical responses to pain." (p. 16)
Wait, we're using eye contact as a sign of conciousness now? I'm too autistic for this. Nope.

Part 2 is/will be here!

Saturday, November 10, 2018

"But that won't fly in [high school/college/the working world/etc...]!"

When people have somewhat unusual methods of ... doing anything, really, there are often authority figures who will try to stop it with the excuse that it won't fly in some other context, so it needs to be stopped in this one, too.

It's bullshit.

First, different contexts are different. A K-12 classroom is not a university classroom is not a construction site is not a factory floor is not an online chatroom is not a floor full of cubicles is not a ballroom. Just because I shouldn't waltz on a construction site, that doesn't mean you should tell me not to waltz in a ballroom because it wouldn't fly on a construction site. Just because some people will (incorrectly) assume my iso headphones (noise reduction, but not cancelling or music) mean I'm not paying attention, that doesn't mean I shouldn't wear them on a factory floor or at a construction site. It doesn't actually mean I should skip them at school or in an office, either. It's an assistive tool for sensory processing issues, and willful continued misinterpretations once I explain that to you once are not my problem.

Second, the context you cite may well consider the unusual method a non-issue. Some people like to tell me that being nonbinary might sound cool on the internet, but at work no one would tolerate that. They're just wrong. I use "they/them" pronouns and either "Mx." or no honorific at all as a teacher. I do the same as a graduate student. I get asked about it on occasion, but it's a non-issue. Your statement that it won't fly in [insert other context here] may well just be wrong. Others would like to tell me that sitting on the floor or under tables won't be tolerated later, so kids with disabilities need to be table-ready as a first priority, ahead of things like getting communication supports. I sit under an actual literal table when I have to go into the lab in graduate school. No one cares.

Third, even if the people in this other context have an issue, have you considered the possibility that they're wrong to do so? The administrators at a university where I studied abroad were of the opinion that I shouldn't come, because "people like that shouldn't be in college." (People like that meant autistic people, in this case.) I feel OK assuming just about any specific autistic trait they took issue with was a cover for them not wanting autistic students at all. Or a rock climbing instructor takes an issue with flapping (without letting go of the person on the wall!) and being left-handed. They're just wrong. Why are you backing up their wrong-ness?

Different environments have different expectations for actual reasons, they might not have the expectations you'd think they have, and other people are just as capable of having bullshit expectations as we are. "That wouldn't fly at work, so I'm not letting it fly in my classroom" is not a good argument. 

Friday, November 2, 2018

In defense of "microlabels"

This is about being an online math teacher, or a graduate teaching assistant, or a physics lab assistant, and it's about being a panromantic asexual nonbinary (or just queer.)

I'm a teacher. When people ask me what I do, I can say I teach. Sometimes they'll want more details, sometimes they won't.

I'm queer. Sometimes people want more detail than that, and sometimes they won't. Sometimes I'll give it to them, and sometimes I won't.

I can tell you that I teach mathematics. I can tell you I'm pan, or that I'm bi. (I consider both statements to be true of me.)

I can tell you that I teach online. I can tell you that I'm ace.

Or maybe I can tell you that I teach online math classes. I'm panromantic and asexual.

I taught in a lab. I'm transgender.

More specifically, I was an assistant in that lab. More specifically, I'm nonbinary.

I've been a lab assistant at 天津师范大学 (Tianjin Normal University), and at the University of Rhode Island. My autism does affect how I do gender, so gendervague is a word I sometimes use to describe exactly how I'm nonbinary.

Obviously, teaching experiences, gender, and sexuality aren't identical. However, when you specifically don't need to know that I did one of my lab assistant jobs in Chinese, you probably aren't going to tell me that it's divisive for me to specify that much, or that I'm just a special snowflake, or anything in that area. People do say that when I come up with words like gendervague.

Not every detail of who I am is going to matter to every person. That's fine. You might not care that I assisted a physics lab in China, using Mandarin. My supervisor in the electrical engineering lab does, because she speaks Mandarin too, and it's useful for her to know I understand the language. You might not care that I'm gendervague. Another reader, themselves autistic, questioning their gender, and wondering if they just might not "get" gender, could find the existence of the word useful. My issue comes up when sharing those details in a mixed audience, where some people will find those extra details to be of interest, is met with outright hostility from the people who don't need them.

Just because it's not information you need, that doesn't mean it's a useless word.

Wednesday, October 24, 2018

I'm apparently an #AAC talk example.

I took a class on augmentative and alternative communication in fall 2017. It was a tiny class, with only three students, which made it practically an independent study. Pretty early on in the class, I watched this video.

This quote stuck out, just a few minutes in. “Sometimes we find ourselves on the floor or under a desk because that's where somebody wants to be.” The context? The speaker is talking about how there aren't any prerequisites for AAC use, including behavioral prerequisites. 

I laughed, and then I got worried.

I laughed because I spend quite a bit of time on the floor, possibly under a desk. I hung out under my cloak, under the table, before my measure theory (graduate math class) final exam. I tend to sit on the floor when given the choice. People in the wearable biosensing lab (the lab my major professor runs) don't just know to look for me under a table if I'm in the lab. They know which table I'll be under with my laptop and whatever I'm reading, or with whatever object I'm doing emergency sewing on. My advisor is quite used to the fact that I sit on the floor during my meetings with him. 

Essentially, I represent this statement. I am the student who is often on the floor or under a desk. I'm also studying for my PhD in neuroscience and passed my comprehensive exams last week, so I'm generally not in too much danger of being denied access to communication based on behavioral prerequisites. (I am at risk of being denied access to communication based on the fact that I can usually speak well, so people could assume I'm faking when I need AAC. That's a problem, but it's a different one.)

My worry is for the people who are in danger of being denied access to communication based on ideas about prerequisites. I understand what it means that a kid hanging out under a desk is the example given here. I have to assume people have been denied access to communication systems for "behavioral" reasons including a tendency to sit on the floor or under desks. I even have to assume this is common. Otherwise, there would be no need to explain: yes, you can get on the floor or under a desk while working on communication supports, if that's where someone wants to be.

That's scary. I know my making it through school has a lot to do with my being passed off with the idea that "gifted kids are weird." I know how easily it could have gone differently. I've written before about one way it could have gone wrong: failing special education kindergarten

What about all the people where it did go differently? What about all the people for whom it's still going differently?

Sunday, September 16, 2018

Five Meals

Hi all, long time no see, time for a "meet the blogger" type post to see if I can get myself writing. (It's been a rough year, and not just because of the political situation. Though being scared of that makes things much harder.) Anyways.

That's the short version. Food is an important part of culture, and of who we are. That's true of both the special foods (that cake!) and the everyday (mac and cheese).   Here's the explained version of why I think each of these five dishes tells you something about me.

  1.  Mom's chicken noodle soup means home, and it means comfort. When I get sick, this is what I want to be eating. It's a very concentrated broth (sometimes made by starting with store-bought chicken broth and then boiling the chicken in it) made entirely with legs and thighs instead of a whole chicken. Noodles are done separately so they don't get soggy, and so mom and I can have different soup:noodle ratios. I basically want a bowl of noodles and chicken with a few pieces of vegetables, barely covered by broth. (My non-Jewish stepmother actually makes a more "traditional" Jewish chicken noodle soup than my Jewish mother does, but that's because my mom modified the recipe so we'd like it better.)
  2. 拉面 is something I ate a lot of every time I studied in China. It's a noodle soup, but Chinese instead of traditionally Jewish. Long, thin noodles in broth, with some shaved meat (beef, where I got it), some vegetables, and a pot of spicy oil available somewhere if you wanted to make it spicy. At the place on campus at 浙江大学 (Zhejiang University), there were just the two options, a small bowl or a large bowl. Most other places where I ate this had a variety of noodle dishes, but this is the one that was already familiar. It was also the cheapest, and I was a student.
  3. Mac and cheese with cayenne and tuna: Think boxed macaroni and cheese, but we buy our own cheddar cheese powder in bulk so it's not technically box mac and cheese. It's the same basic recipe, but heavier on the cheese, butter, and milk (whole milk!), and then we add some extra spices and put tuna in it. Cayenne is the main extra spice. When I get queasy, this is one of my safe foods. I'm aware that's weird, but it works. (When I was in Tianjin and couldn't cook, I put noodles in my basket at local 麻辣烫 place for my safe option of "absurdly spicy noodles." At restaurants in the US that have it, a seafood alfredo is usually as close as I can get, and will be my order if I'm queasy.)
  4. Lamb vindaloo. From my sophomore through senior years of high school, I was on the Eastern Massachusetts team for American Regions Math League. (Well, the E team for it. We sent three teams and went A, E, B for some reason that I never understood and never really asked about.) While we were in Pennsylvania for the competition, I went to an Indian restaurant with some of my teammates. I forget what I got. A teammate with no spice tolerance got vindaloo. I finished his vindaloo, and it has been my favorite Indian dish since.
  5. Three layer chocolate cake with chocolate whipped cream frosting I make for my birthday. I got the recipe from my dad, who also makes it for his birthday. He makes it for one of my sister's birthdays too. We all have the same favorite chocolate cake. The recipe comes from a book of chocolate desserts. When I make it, I use a darker chocolate and slightly more of it than the recipe says, and we all take it out of the oven a bit earlier than the suggested time so as to get the suggested texture.

Wednesday, June 27, 2018

"They aren't having communication breakdowns"

I've heard plenty of arguments about why AAC isn't needed. Thankfully, I hear most of them in the context of people explaining what they do when they encounter them, rather than the context of people trying to tell me not to type to communicate. Today, Dana Neider, the blogger behind Uncommon Sense, gave the keynote for AAC in the Cloud today. She mentioned one that I hadn't heard before and I wasn't really expecting to encounter.

“They aren't having communication breakdowns.”

Now, I've studied a foreign language. I suspect many, if not most, of you have as well. I took Mandarin Chinese for 11 years (ages 11-21), and spent a total of a year, including the entire last academic year of study, in China. By the definitions set by the American Council for the Teaching of Foreign Language, I reached Superior proficiency for reading, writing, and listening, and Advanced High for speaking. This was hard work! Guess what's in the explanation of the Advanced High proficiency level? That's right. Occasional breakdowns that are based in language proficiency. (They don't talk as much about breakdowns that happen for other reasons.)

The next level up, Superior, is supposed to be equivalent to a college educated native speaker in terms of what you can say. (We're not expected to actually sound like one. Accents exist and every culture has its own common expressions.) So. One step down from a college educated native speaker, we're still talking about occasional language proficiency related communication breakdowns. And you want me to believe a K-12 student never has any? Sorry, but no. I don't buy that. I've met kids ever in my life. Heck, I've been a kid ever in my life.

Or. I'm a teacher. Trying to explain new concepts to people is literally my job. Do I use more than just speech to do this? Absolutely. (I presented at this same conference, about AAC in the classroom, for teachers who need AAC.) Do I experience communication breakdowns in the classroom on occasion? Again, absolutely. Of course I do. Students aren't sure what question I'm asking them. I'm not certain what question they're asking me. Communication issues always, always, have at least two sides. It's neither just me nor just them. If a tool can help either side, or both sides, repair the breakdown, still take it.

Besides, can you honestly say no one's ever misunderstood what you were trying to tell them? In the last few days, weeks, months, have you never been misunderstood, or misunderstood someone else? No one even got your coffee order wrong? Really? Because I got asked if I wanted a hamburger, and then got handed a cheeseburger when I said yes. I eat hamburgers, but not cheeseburgers (texture issues.) That's a communication breakdown right there. AAC wasn't required in order to fix it, but it happened.

So. We've established pretty well that I am 100% certain the person making this argument is wrong, not just in their conclusion, but in their premise. I don't think they're lying, but they're incorrect. Their student or client is absolutely experiencing communication breakdowns. Why don't they know?

  1. Their client or student doesn't have the needed communication access in order to say they're having communication breakdowns. I know, from experience, that if I need to use speech in real time, I'm not going to be able to correct most misunderstandings. It's just not going to happen. So you might not even know there was a misunderstanding. Give me AAC and I have a shot. Which, of course, now means you know there was a problem. That's actually progress!
  2. They've learned from experience that trying to repair communication breakdowns isn't worth it. Have you ever decided not to address a misunderstanding because you thought it wasn't worth it, or that it wouldn't work anyways? I know I have. And yes, I've done it in an educational context, with points for a class on the line. This past fall, even. In an environment where I had access to AAC and could totally have typed for the conversation. I didn't think it was worth the time or energy it would take, so I let it slide. Imagine that attempts to repair communication breakdowns mostly haven't worked in the past. How often are you going to try, even if the option is available?

Neither of these are reasons to skip the AAC. The first is actually a reason to provide it. The second … AAC won't fix this problem. However, if communication needs not being met was part of why past attempts at correcting misunderstandings didn't work, proper access to communication (likely including AAC) can have an effect on the decision-making process here. That doesn't mean they'll always decide to tell you about misunderstandings. Do you try to correct every misunderstanding you ever encounter? Or do you let some things slide, especially if you don't know someone well or don't trust them to change their mind even given the proper information? Besides, plenty of disabled people have reason to mistrust therapists. We might not want you to have the "correct" information! So providing AAC may or may not lead to you knowing about communication breakdowns when they happen, but if you think there aren't any, that just means you're missing them.

TL;DR: Everyone has communication breakdowns sometimes. If you think your client or student doesn't, that means you're not finding out about them. Maybe they literally can't tell you for communication access reasons, or maybe they've decided it's not worth trying to repair the breakdown. Make AAC available anyways.

Thursday, June 7, 2018

Assigned "friends" and unintended lessons

I often hear about things like "assigned friends" and "friends of the day" in disability contexts. It creeps me the heck out.

Essentially, a student who is presumed to be abled is assigned, in some fashion, to a classmate who is presumed to be disabled, is new to the class when no one else is, or is presumed to "need help with social skills." Sometimes this means the person is assigned to be their partner (or in their group) for any partner and group activities that happen that day. Sometimes it means the person is assigned to sit with them at lunch, or play with them at recess. Sometimes it means the person is assigned to assist with some disability-related task (which makes me wonder if saving money on aides and services is part of the rationale here.) Sometimes it's a combination of these things.

I've actually been both the assigned friend and the person to whom friends are assigned, at different points. Neither was good. I learned things from both that were ... probably not what I was supposed to learn from either. Or at least, not what the teachers would have claimed I was supposed to learn. So, in no particular order, here's some things I learned that they probably didn't mean to teach me this way.

  • School bullies, like all other abusers, know how to be sneaky. Do I think the teachers meant to assign my bully to be my friend? Or me to be my bully's friend? No on both counts. (Yeah, the kid I was assigned to the one time I was the presumed abled kid in this equation was also a bully. Disabled people aren't immune to being bullies ourselves.) But it happened, because bullies know how to be sneaky. And yes, I had a bully who requested that she be "assigned" to me as a friend in order to get and stay closer.

  • Playing alone at recess isn't an option. These "friends" tended to get assigned more after I had been playing alone on the swings or alone looking for (and finding!) four leaf clovers at recess. Or running laps around the field. Yes, really. I ran laps around the field alone at recess for most of fourth grade, because my actual friends a year below me didn't have recess at the same time I did anymore. This got me assigned so-called friends in my own grade a few times. The assigned friends were not usually people I had common interests with and were often people who bullied me when the teachers couldn't see. I did have one actual friend in my grade, but he was never my "assigned" friend.
  • Since "friends" are the people who are basically assigned to put up with me, anyone who's spending time with me is probably just putting up with me. They don't actually like me. Yes, this is a factor in my social anxiety. I'm not alone in learning this lesson about friendships, and teaching indistinguishability as a goal can teach this lesson too.
  • I don't get to decide for myself who my friends are. "Friends" are whoever I'm told to be friends with, or whoever is told to be friends with me. So not only do I not get to decide who I'd like to be friends with (not the kids who would ever get assigned as friends, by the way), but I also don't get to decide who I'd rather avoid.
Teachers don't think about the effects of further singling out the "weird" kids. Or they don't care. Look, if you are 1)  assigning kids to be closer to their bullies and 2) pointing out who the weird kid was at the same time, you either don't know or don't care that this is going to make the bullying worse. Those are the options. I am giving you the benefit of the doubt when I assume you don't know.
So, are these the lessons you want to teach?

Wednesday, May 23, 2018

I'd rather see a student psychologist. Really

I'm in therapy right now. I have been (in this iteration) since late January, both dealing with deaths in the family (three this semester, one of which hit me harder than most - that was my grandfather near the start of January) and trying to get something resembling a handle on my anxiety. On the to-do list is gender-related stuff, eventually, since I do have some physical dysphoria in addition to the social stuff. But that's not the point. The point is that I actually prefer to have a student as my therapist, and there are a few reasons.

  1. Students are usually less confident. That might seem like a disadvantage, and I suppose it could be for some people, but in my case it's important. I am very good at being an outlier. Someone who is confident in their expectation that things that work for most people will work for me ... is not going to be a good match, because they are often going to be confidently wrong.
  2. Students knowledge is as up to date as it is ever likely to be. It's a reality of graduate school that we have to be reading a lot of recent research. It's a reality of regular practice in most fields, including psychology, that people don't have time to be reading that much recent research. There are, of course, exceptions, but in general your best bet for the most up to date information is a current graduate student.
  3. Those two things combine to increase the likelihood that students have heard of neurodiversity and are at least open to the idea. I'm not actually the one who brought up neurodiversity in my sessions, because my initial focus was on grief. My autism was only relevant in the way it's always relevant: the way my brain is wired up affects how I process literally everything, including grief. At some point it was relevant and the therapist I'd been seeing asked me if I'd "heard of" neurodiversity. (I think this must have been the day I my ability to speak went out part way through the session and I switched over to typing, because I didn't burst out laughing immediately.) Yes. Yes, I have heard of neurodiversity.
  4. The psychological consultation center on my campus doesn't take insurance, but it runs on a sliding scale based on income, and sessions are $5 for students. That's cheaper than co-pays even on most good insurance.
Between these factors, I'd really rather go to a clinic where students are being supervised. Folks there are more likely to be a reasonably good match for me.

Monday, May 14, 2018

Not the way you mean

In my experience, a lot of questions get asked as proxies for other questions. Sometimes the two questions have different answers. Most of the times I can think of this happening have been somewhat medical. Which might be its own pattern, or might be because I notice/remember it more when the difference matters more. I'm not certain.

Example the first: Have you fallen in the last six months?

Every time a doctor has asked me this, they've wanted to know if I have balance issues (kinda, but they're not getting worse). They may or may not have appreciated being told that when a beginner ice skater crashed into me from behind, I did hit the ice. They may or may not have appreciated being told that my brother successfully tackled me during a backyard football game. They may or may not have appreciated hearing that I wiped out once on a week long ski trip. Whether or not they appreciated my precision in answering the question they actually asked, it's not the information they were really looking for. Mostly, I'm a clumsy person who tries to athlete anyways.

Example the second: Have you had any bruises where you don't know where they came from?

Bruises without having some sort of noticeable physical impact or injury first can be a sign of a bunch of health issues. If we have bruises and don't know where they came from, that's a possible explanation. In my case, a bruise that I don't know the exact source of is actually a bruise where I can't tell you which of the assorted desks, walls, chairs, tables, or poles I clipped my hip on actually left the bruise. It is over-explained, not unexplained, but I technically don't know where it came from.

Example the third: Have you been convinced something is wrong with a food or beverage when everyone around you says it's fine?

This was at a psychology intake. Given the context, I'm reasonably certain she wanted to know about paranoia. Here's the thing. I have sensory processing issues. Most people around me think scrambled eggs are food, but the texture means I disagree. Strongly.

Example the fourth: Have you ever been convinced something was medically wrong when the tests were coming back fine and the doctor said you were fine?

Psychology intake again, probably about paranoia again, but let's be real: this also happens to most people with a chronic illness at some point, and they (we) are 100% correct that something is actually wrong. Also, I have an 8 year old dent in my shin that wants you to know doctors can miss broken bones on X-rays.

Example the fifth: Have you ever heard things that other people around you did not hear?

Psychology intake still, standard question I'm pretty sure. They've asked me that every time I've had an intake. Yes. I hear things other people around me don't hear. It's called being 25 and still being able to hear up to 20000  hertz. In combination with sensory processing issues, this is really not fun, because that sound that I am experiencing significant pain from is completely outside the range anyone around me can still hear. Ow. It's not an auditory hallucination, though.